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2013 Top-Rated Nonprofit

Breath of Hope Inc.

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Nonprofit Overview

Causes: Birth Defects & Genetic Diseases, Health, Philanthropy, Philanthropy, Charity & Voluntarism Promotion

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

Community Stories

42 Stories from Volunteers, Donors & Supporters

8 mexicalislim

Client Served

Rating: 5

We lost our baby to CDH last year. And since then we have spoked to many organizations/charities yet none have been as heartfelt as BOH. When Elizabeth says she is there for you she means it. The warmth felt through our conversation is indescribable. Her support is unmatched. We had approached other nonprofits with ideas to help educate the public and each said no. But at BOH their belief is the more noisy wheels out in the world the better. They want as many people as possible to help spread the word of CDH. Each organization has there own agenda. But at BOH they really do care about each family. We not only received a care package but Elizabeth actually sent us a hand painted care box for our son. No other organization went to this limit. The community of BOH members also seem to be just as kind. We have established some great relationships with families through this community. Thank you Elizabeth and all the hard workers of BOH you have done so much for us. The Frias'

1

Client Served

Rating: 5

Truly find it upsetting that each time Breath of Hope has requested reviews they receive some from people who obviously have another agenda for another charity. It is sad that an organization that is committed to transparency who supplied the IRS with forms before even being required to do so and continues to provide a more detailed form rather than the postcard which is required is continued to be ridiculed by whom? Breath of Hope has no paid employees, they were the first CDH organization to donate to medical research, first CDH organization to give scholarships and first CDH organization to give packages to those expecting or who have a newborn with CDH, yet they are bashed.

And that charity's President is all about filing one lawsuit after another against Breath of Hope - and the two that were filed - BOTH were dismissed! DISMISSED! So stop bringing them up and dividing the community!

Review from Guidestar

4

Client Served

Rating: 1

The reason people post anonymously here is because Elizabeth cannot delete it and cannot attack them personally for questioning or having concerns. This has long been an issue at Breath of Hope. Posting here also makes Elizabeth publicly accountable for how she responds to CDH families and how honest and factual her responses are.

I would like to ask the Board of Directors at Breath of Hope, Incorporated if the following is true. Your tax returns state that you have given out the following funds:

2012

Research $0.00
Family Grants $0.00
Scholarships $0.00
Pay to Other Charities $200.00

2011

Research $0.00
Family Grants $0.00
Scholarships $1000.00

2010

Research $750.00
Family Grants $0.00
Scholarships $3000.00
Pay to Other Charities $350.00

2009

Research $10200.00
Family Grants $0.00
Scholarships $10000.00
Pay to Other Charities $100.00
Legal Fees $12,309.75

2008

Research $0.00
Family Grants $0.00
Scholarships $0.00
Pay to Other Charities $200.00

2007

Research $0.00
Family Grants $0.00
Scholarships $0.00

Did your charity only fund $750.00 for Congenital Diaphragmatic Hernia research in the past 3 years? Has your charity ever supported any CDH family monetarily through funds at your charity?

I would like to request a very clear honest answer and not one of Elizabeth's full of smoke responses and attacks on others. I also would like to know how much BOH is giving to research and families in direct funds not how much they helped in other ways or indirectly. It is a very simple question of direct monetary support for research and families. By law this information is public.

I received this in my e-mail:


From: GreatNonprofits
To: cdhsuperhero@yahoo.com
Sent: Monday, August 19, 2013 4:52 PM
Subject: New message from GreatNonprofits user

This message was sent to you by a member of the GreatNonprofits community:

From notifying all the nonprofits and groups you listed on your "review". One replied with this link below - if Cherubs doesn't come up - please enter it and search - they are no longer a registered charity in North Carolina and therefore can not fund raise. And each state has it's own rules and regulations for fundraising. Breath of Hope is registered in 10 states, including Virginia.


http://www.secretary.state.nc.us/csl/results.aspx?searchstr=Cherubs
from boh@breathofhopeinc.com
If you'd like to unsubscribe and stop receiving these emails click here.

In response to this I would like to know what 10 states Breath of Hope, Inc. is registered in. This should be public information as well. I would also like to know why you thought it your duty to email me and criticize another charity.

Another email:


From: GreatNonprofits
To: cdhsuperhero@yahoo.com
Sent: Monday, August 19, 2013 3:48 PM
Subject: New message from GreatNonprofits user

This message was sent to you by a member of the GreatNonprofits community:

We will counter this with where is it that anyone who is an official officer with Breath of Hope has stated anything about any nonprofit's salaries?

As for other charities filings - you may want to take the fact that if a charity generates less than a curtain dollar amount in revenue/donations, they do not file a 990 Form for the US.

Chapters are filed under the parent charity but at this time we have been waiting on Team Abel - they have 18 months from the filing they did do in the State of CO to present us with their information or become an independent charity. Shooting for Liam has decided not to go for the chapter designation and just be a program of Breath of Hope.

As for MJ Memories - it is a project of Project Sweet Pea, which is a registered charity. Perhaps you should do a bit more homework on charities and actually ask those charities about their information before making accusations?

We can not answer for charities outside the US and have no knowledge on that subject.

We also find it rather convenient with all the good reviews we have here from real people - the few that are bad reviews are from those that never were served by Breath of Hope and/or anonymous and will not go directly to our charity and ask questions.

from boh@breathofhopeinc.com
If you'd like to unsubscribe and stop receiving these emails click here.

In response, yes every charity has to file a tax return and be licensed no matter the amount of income. I distinctly remember you attacking CHERUBS for not filing when they had little income. Are the laws different for your friends?

You have posted here about Dawn's salary and deleted it. Screen captures have circulated and many of us saw your original comments with our own eyes. Do you still say that you never typed the words publicly posted?

I see that you now have a Gold seal at GuideStar which means that you were audited. Would you make this audit public please? You stated that audits cost $10,000 so this would mean you spent $10,000 out of $16,000 for an audit. Is that true?

Thank you for hopefully an honest and professional response.

Your response:

boh_ wrote: September 23, 2013

And this proves that these anonymous "reviews" are ALL false. In 2008 Breath of Hope sent $550 (with a total revenue of just over $4,000) to CDH Research at Johns Hopkins Medical Center. In 2009, Breath of Hope sent over $15,000 to Saint Louis Children's Hospital for CDH Research. In 2010, Breath of Hope sent $350 to Global CDH for the NYC Marathon which benefited the DHREAMS Study and $750 to Saint Louis Childrens for CDH Research. Also in 2009 we awarded $10,000 in Scholarships to 5 recipients and in 2010, $3,000 in scholarships to 3 recipients. In 2011, one scholarship for $1,000. This is all available on Guidestar on our 990 Forms - you can email boh@brethofhopeinc.com and we will be happy to send you the official 990 Forms - we have them from 2007 when we first started accepting donations through 2012. The 2012 990 Form is not available from Guidestar yet but we will be happy to provide you with the 2012 Form we mailed in May.

My response to this is that the numbers were taken directly from your IRS forms posted on Guidestar including your 2012 form that is also posted. They are the amounts that you sent to the IRS. If that data is incorrect then you should amend your returns. I suggest you also make your returns publicly available freely as Guidestar viewing of forms is not free. This would clear up any confusion donors would have without being subjected to having to ask you for the forms to review or having to pay to see them. It would also assure them that you have not doctored any forms that you send to them and have nothing to hide.

Are you stating that all anonymous reviews and complaints are not valid concerns or opinions but attacks on you and your charity?

Does your charity have a whistleblower policy to keep members and the public safe from the wrath of those criticized?

Thank you for clarifying that BOH has given only $750 in research funding in the past 3 years and overall has spent more on legal fees than research funding in BOH's entire lifespan. You have also spent more on scholarships for individuals of your choosing than on research. Is that correct as well?

I am still awaiting response on the other questions that I posted that you neglected to respond to.

You commented here the following:

boh_ wrote: September 23, 2013

Annual Audits? We collect under $25K a year in donations and revenue, explain this? We have adopted Sarbanes-Oxley Act and Implications for Nonprofit Organizations adopted from Boardsource which includes a whistle blower policy. Over $30,000 has been donated to CDH Research and Scholarships since Breath of Hope was established. We were the first nonprofit organization for CDH to send our Care Packages world wide, that program has existed far before any others out there. We have sent thousands of these packages out and they contain accurate MEDICALLY REVIEWED materials. Our CDH Research Fund from last year will be combined with funds this year to donate to two separate Research Funds. Registration in states? VA, NY, CO, AZ, KS, and there are several pending. Perhaps you should stop updating this list on a daily basis. We have families to support and other things to do than answer some Troll who has nothing else better to do but bash us and several other charities. You brought other charities into this conversation.

I will respond that every donor and member of the public has the right to question any non-profit. We also have the right to receive a professional response to any questions asked including about funding. It is not professional to respond with name calling and defensiveness instead of simple answers.

Breath of Hope, Incorporated from 2007 to 2012 as written on your 990 IRS tax forms:

Scholarships $14,000.00 to benefit 6 people
Legal Fees $12,309.75 in one year
Research $10,950.00 with a total of $0.00 in the past 3 years
Pay to Other Charities $850.00
Family Grants $0.00

You are not registered in Arizona. http://www.azsos.gov/scripts/Charity_Search.dll

You are not registered in Kansas. http://www.kscharitycheck.org/search.asp

Your registration in New York is outdated. http://www.charitiesnys.com/RegistrySearch/show_details.jsp?id={F2F8C045-032E-454D-80FA-5392DACE1064}

Your chapter in Colorado has not filed a 990. http://www.sos.state.co.us/ccsa/ViewSummary.do?ceId=112499

If you have not had an audit you are not eligible for Guidestar gold level charity status. You also do not voluntarily submit financial data to the site. You do not make your financials available freely to donors without gating them at your discretion. You are not a transparent charity.

Why is it not acceptable to hold you under the same microscope that you hold other charities under but with a much cleaner lens? My analysis and questioning has been accurate and professional without any personal contempt or attacks. This is far kinder and more mature than how you have treated others.

If someone has a complaint or question about your charity whom should they speak to? If someone has a complaint about you Elizabeth, is there anyone above you to confer with?

Is anyone overseeing the accounting at Breath of Hope, Inc except for Elizabeth Doyle-Propst?

Is anyone available to respond to questions and concerns here except for Elizabeth Doyle-Propst?

I would like to request copies of your 990s, financial data and meeting minutes for every year sent by email to cdhsuperhero@yahoo.com or posted publicly within 10 business days of September 25, 2013. These records are public record and by law you must grant them unedited to anyone who requests them.

Thank you for your cooperation.

You responded:

boh_ wrote: September 25, 2013

Contact us at boh@breathofhopeinc.com with your requests. For the record, our Board of Director Meeting Minutes are not subject to public review and are not required to be provided. The $12,309.75 was not just for legal council but also for website design and technical support - contracted work. Our scholarships were awarded from a grant we received for this purpose. Awarded to 4 CDH survivors, a RN who did post graduate work who works at CHOP with CDH families, an Aunt to a CDH survivor and a future MD. We didn't give ourselves the rating from Guidestar. AZ registration is pending. CO - 990 Form was not required to be filed and we have yet to hear from them if they want to be an affiliate or a chapter. New York - we registered and have not received any information because it isn't required if your revenue is under a curtain $ amount. You need to do some research before you microscope our charity. We will provide you documentation, when you email us - we will no longer respond to this "public forum" nor are we required to do so. Suggest you make the same requests of others and it is astounding how you continue to post here, bash our charity in support of one that constantly does the same. CDHSuperHero or are you Dawn Williamson, who needs to focus on her charity and stop creating accounts and focusing on others?

Then you edited your comment to:

boh_ wrote: September 25, 2013

Actually Board Meetings are not subject to public inspection. We have provided documents to Guidestar and they are the ones that do the rating, complain to them, not us. When you email us at boh@breathofhopeinc.com and request the documents, we will provide them - but the 990 Forms are available for public inspection on Guidestar too. This is a public forum, you must make a formal request of us to receive the documents. The AZ and KS registrations are pending. As for CO - we explained that they are in formation and have up to 18 months to make the decision to be a separate affiliate or to become a Chapter. A 990 Form is not necessary if their revenue was under $25K. NY does not require annual registration for foreign charities with revenue of less than $25K. Again, formally make your request, we have verified this with the IRS a formal request must be made - you can either email us at boh@breathofhopeinc.com or mail your request at Breath of Hope, PO Box 6627, Charlottesville, VA 22906 and you will receive your requested documents within 30 days.

And then you added:

boh_ wrote: September 25, 2013

Board of Director Meeting Minutes are not subject to public inspection by law. We are registered in NY, AZ and KS are also pending. Guidestar makes those ratings, not us - so complain to them. Not us. We do provide them with documentation and it is available, however the 990 Forms duplicated on the site are unnecessary and those they obtain from the IRS are stamped with the date they were officially received by the IRS. When an organization completes 990 Forms when they do not have to but could file a post card for under $25K in revenue - that shows they are indeed transparent. We do not pay salaries. As for the $12,309.75 includes website design and technical assistance that was contracted work. If you want these documents, formally request them by either emailing boh@breathofhopeinc.com or mailing us at Breath of Hope, PO Box 6627, Charlottesville, VA 22906, we will provide what we are legally to provide you within 30 business days.

In response I say to you that ignorance and arrogance only serves idiots.

I have tried to have an intelligent, professional conversation with you and gave you amble opportunity to be honest. You instead chose to continue to lie, show your lack of knowledge in running a charity and following legal guidelines and still you attack others. Unfortunately your inactive Board of Directors has yet to step in and represent any ounce of professionalism and knowledge of what goes on in your charity.

Your financials clearly show that that amount of money was specifically and solely paid for legal fees. Either you were lying then or you are lying now. That is a theme is that is repeated throughout this conversation.

I requested documents that you are legally obligated to supply. You might put up a smoke screen for others but that does not work for those of us who fact check and choose to not believe you at your ever-changing word. Fail to supply the requested documents and I will report you to the federal government and every state you claim that you are registered in.

This is the real world of professional adults. I suggest that you learn how to conduct yourself like one for the sake of your charity and try a more honest and respectful approach with the public and those your mission says that you serve.

Comments ( 5 )

profile

boh_ 09/23/2013

Annual Audits? We collect under $25K a year in donations and revenue, explain this? We have adopted Sarbanes-Oxley Act and Implications for Nonprofit Organizations adopted from Boardsource which includes a whistle blower policy. Over $30,000 has been donated to CDH Research and Scholarships since Breath of Hope was established. We were the first nonprofit organization for CDH to send our Care Packages world wide, that program has existed far before any others out there. We have sent thousands of these packages out and they contain accurate MEDICALLY REVIEWED materials. Our CDH Research Fund from last year will be combined with funds this year to donate to two separate Research Funds. Registration in states? VA, NY, CO, AZ, KS, and there are several pending. Perhaps you should stop updating this list on a daily basis. We have families to support and other things to do than answer some Troll who has nothing else better to do but bash us and several other charities. You brought other charities into this conversation.

profile

boh_ 09/25/2013

Contact us at boh@breathofhopeinc.com with your requests. For the record, our Board of Director Meeting Minutes are not subject to public review and are not required to be provided. The $12,309.75 was not just for legal council but also for website design and technical support - contracted work. Our scholarships were awarded from a grant we received for this purpose. Awarded to 4 CDH survivors, a RN who did post graduate work who works at CHOP with CDH families, an Aunt to a CDH survivor and a future MD. We didn't give ourselves the rating from Guidestar. AZ registration is pending. CO - 990 Form was not required to be filed and we have yet to hear from them if they want to be an affiliate or a chapter. New York - we registered and have not received any information because it isn't required if your revenue is under a curtain $ amount. You need to do some research before you microscope our charity. We will provide you documentation, when you email us - we will no longer respond to this "public forum" nor are we required to do so. Suggest you make the same requests of others and it is astounding how you continue to post here, bash our charity in support of one that constantly does the same. CDHSuperHero or are you Dawn Williamson, who needs to focus on her charity and stop creating accounts and focusing on others?

profile

boh_ 09/25/2013

Actually Board Meetings are not subject to public inspection. We have provided documents to Guidestar and they are the ones that do the rating, complain to them, not us. When you email us at boh@breathofhopeinc.com and request the documents, we will provide them - but the 990 Forms are available for public inspection on Guidestar too. This is a public forum, you must make a formal request of us to receive the documents. The AZ and KS registrations are pending. As for CO - we explained that they are in formation and have up to 18 months to make the decision to be a separate affiliate or to become a Chapter. A 990 Form is not necessary if their revenue was under $25K. NY does not require annual registration for foreign charities with revenue of less than $25K. Again, formally make your request, we have verified this with the IRS a formal request must be made - you can either email us at boh@breathofhopeinc.com or mail your request at Breath of Hope, PO Box 6627, Charlottesville, VA 22906 and you will receive your requested documents within 30 days.

profile

boh_ 09/25/2013

Board of Director Meeting Minutes are not subject to public inspection by law. We are registered in NY, AZ and KS are also pending. Guidestar makes those ratings, not us - so complain to them. Not us. We do provide them with documentation and it is available, however the 990 Forms duplicated on the site are unnecessary and those they obtain from the IRS are stamped with the date they were officially received by the IRS. When an organization completes 990 Forms when they do not have to but could file a post card for under $25K in revenue - that shows they are indeed transparent. We do not pay salaries. As for the $12,309.75 includes website design and technical assistance that was contracted work. If you want these documents, formally request them by either emailing boh@breathofhopeinc.com or mailing us at Breath of Hope, PO Box 6627, Charlottesville, VA 22906, we will provide what we are legally to provide you within 30 business days.

profile

boh_ 09/26/2013

A professional would contact our nonprofit directly not some "open forum" with accusations about other nonprofits. We are legally required to provide our 990s and apparently you already have them. You are correct on the legal fees for just 2009, we were mistaken, however we have operated for a total of 10 years and paid just under $13,000 for legal fees. Average cost of a nonprofit's legal fees per year is usually around $10K a year. Going back to your first negative review - we hope that you microscope the other charity you are supporting (obviously a volunteer with that one and has never been served by our own, they all have this "competition" insanity about them). You have been sent our 990 Forms and our Board of Director Meeting Minutes are not subject to public inspection. If you want more information, you can email our pro-bono attorney at legal@breathofhopeinc.com, thank you. As stated, the Meeting Minutes are not for public inspection, please contact the IRS regarding that, if you don't believe us. We will email you all the 990 Forms.

Previous Stories
1

Client Served

Rating: 1

After reading all the posts this week attacking CHERUBS I had to ask a few rhetorical questions.

Why doesn't Elizabeth focus on her own charity? So what if Dawn makes a salary? Your posts seem jealous and petty. So what if they are late on paperwork? Is that your business? Why don't you look into these charities that Breath of Hope publicly promotes and proudly works with?

Global CDH - Never filed a tax report. http://www.guidestar.org/ReportOrganization.aspx?ein=80-0186856

Nayeli Faith Foundation - Never filed a tax report. http://www.guidestar.org/ReportOrganization.aspx?ein=80-0417228

Parker Reese Foundation - No tax report since 2009. http://www.guidestar.org/ReportOrganization.aspx?ein=26-1737136

CDH UK - 44 days late on their financials this year. http://www.charitycommission.gov.uk/search-for-a-charity/?txt=cdh+uk

Ladybug Run - Not a registered charity.

MJ's Memories - Not a registered charity.

Breath of Hope-Colorado Chapter - Not a registered charity.

Breath of Hope-Shooting for Liam Chapter - Not a registered charity.

Breath of Hope - Hypocrites.

Comments ( 1 )

profile

boh_ 08/19/2013

We will counter this with where is it that anyone who is an official officer with Breath of Hope has stated anything about any nonprofit's salaries? As for other charities filings - you may want to take the fact that if a charity generates less than a curtain dollar amount in revenue/donations, they do not file a 990 Form for the US. Chapters are filed under the parent charity but at this time we have been waiting on Team Abel - they have 18 months from the filing they did do in the State of CO to present us with their information or become an independent charity. Shooting for Liam has decided not to go for the chapter designation and just be a program of Breath of Hope. As for MJ Memories - it is a project of Project Sweet Pea, which is a registered charity. Perhaps you should do a bit more homework on charities and actually ask those charities about their information before making accusations? We can not answer for charities outside the US and have no knowledge on that subject. We also find it rather convenient with all the good reviews we have here from real people - the few that are bad reviews are from those that never were served by Breath of Hope and/or anonymous and will not go directly to our charity and ask questions.

4

Client Served

Rating: 5

My son was born in 2008 with CDH and when I was diagnosed I felt so completely alone and scared to death. I had never heard of CDH, I didn't know what to expect and I couldn't find any answers. I found BOH and I cannot put into words how wonderful this organization has been to me. This community is so full of wonderful and loving people and Elizabeth has answered every email, shared every facebook post, sent cards, awareness bracelets, whatever we needed. This group literally saved me during the darkest time of my life. We lost our son and I don't know what I would have done without them to turn to. When no one else understood my pain, how alone I felt, they did. This is a wonderful organization and I am so incredibly thankful for them.

Previous Stories
17

Client Served

Rating: 5

When I found out that our son Cadan had CDH, Breath of Hope provided me with support and answers where there were no answers. After we lost Cadan, they have continued to be there for me whenever I need support. I would have never made it through this experience without them. They gave us an idea of what to expect before and after Cadan's delivery and were there every time I was about ready to lose my sanity. I owe so much to this organization and I want others to find out about Breath of Hope. Breath of Hope gives you hope in what feels like a hopeless situation.

3

Client Served

Rating: 5

Breath of Hope is a wonderful organization! They have supported our family by sharing our story, helping us to promote fundraisers, and providing us with a network of extremely supportive people. I have had only positive experiences from Breath of Hope. They present information about CDH awareness in a very tasteful and hopeful way. We have never been turned away but rather they have embraced our family with open arms and much love!

3 Heidi20

Client Served

Rating: 5

Breath of Hope is a wonderful support group for CDH. They helped to form friendships with other CDH parents. It is such a wonderful organization that I have a hard time standing back and watching Dawn of Cherubs continually attack Breath of Hope. Dawn uses her vulnerable parents/clients to stir up drama and keep old arguments going. She used me when I was weak and she has used many others. Dawn has a problem working with others and needs all the attention on her organization. I support Breath of Hope and wish Dawn would stop writing fake bad reviews on Breath of Hope and just do her job and move on and leave things in the past for the advancement of CDH Awareness.

Previous Stories

Client Served

Rating: 5

BOH was the ONLY active CDH organization when my daughter was diagnosed with CDH in 2006. The support I received was amazing! The network of other CDH parents that BOH provided became my lifeline as my daughter fought for her life. I had other CDH parents visit me while we spent several months in the hospital. Some of these wonderful people came even though their CDH Angel was no longer with them. These visits meant the world to me! I owe my sanity to BOH!

4 Tabbatha H.

Client Served

Rating: 1

First of all...... BOH states they have board members and a team of people working to help CDH families, why is it that the number given goes straight to Elizabeth's cell phone, house phone whatever it is? Also, why is it always just Elizabeth that writes on there facebook page, responds to these reviews even on this page? I called to make a complaint about Elizabeth to her board members, even though i know she is the founder. She is a rotten, rotten, woman who attacks if you do not fully support BOH. Especially if you show any support to Cherubs. She attacked me through a facebook message..which if anyone(Including you Elizabeth) would like me to post on here, I will surely do so. She then blocked me off her own personal facebook, then blocked me from writing or liking anything on the breath of hope site. If your charity has a so called board of members, please give me a number to it. I do not wish to speak to Elizabeth. I am so shocked, upset and angry at the way Elizabeth acts. Attacking a grieving angel mother. I will not even get into how I feel about her trying to have the rights to congenital diaphragmatic hernia day. Tying Cherubs up in court for years over it! Are we all not supposed to work together? I thought BOH has one mission? To get more research and answers to CDH? Fighting against another charity(or charities) Is ignorant and god truly is showing BOH that. Cherubs has succeeded so much in the past 2 years and the dedication, hardwork and honesty are paying off for Cherubs. Yet, Cherubs does not pat themselves on the back for all there hardwork. They are to busy worrying about our CDH families and who can they reach out to tomorrow to spread the word about CDH. IF ONLY BOH would stop wasting HER time calling people names and attacking others, SHE can realize all of us working together will succeed both charities greatly.
In response to your comment Elizabeth.... What your saying is not true at all. I was a client served by BOH...look at your records. I "liked" your BOH facebook page back in 2011 after i had just given birth and my daughter was in your calendar 2 years in a row. You never came to me and another person about the research bill, we came to you. Yes we did flood your page but you never said to back off. I have the messages to prove it. I never friend requested Elizabeth nor did she friend request me. I wrote a message to her asking her to come on board with the research bill. That is when she became very nasty and proceeded to block me. I have called the number(s) numerous times & it goes straight to Elizabeths voicemail. So if i am calling the wrong number please give me the correct one. I will be posting the facebook messages under a different name as you can not write a second review. God bless & lying does not get you anywhere :) have a nice day!

Comments ( 1 )

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boh_ 08/01/2013

Tabbatha, You never were served by Breath of Hope - you became overly active on our Facebook page when we tried to offer support on a research bill, you and one other. Where you both proceeded to fill up our page with comments about how we should run that campaign. And when you originally contacted our Executive Director, she told you that the Board was making a decision on the research bill, the Board, not our Executive Director. A few days later, Elizabeth asked you to take it down a notch and you were offended. When we have families who had children in the hospital at that time and were focusing on them. The Facebook page, our Yahoo Groups - have administrators that are all on our Board of Directors. Breath of Hope is a Member organization of N.O.R.D., Center for Nonprofit Excellence and The Alliance of Nonprofits and all had reviewed our organization prior to accepting Breath of Hope. How do you know who answers our toll-free number? You know those numbers are logged on the vendor we have for that service? The toll-free number goes straight to the Breath of Hope voicemail, not a personal voicemail. (This number is on our website, on this site and on our Facebook page.) You were blocked because you were rude and disrespectful, as you have been here. You contacted our Executive Director on Facebook to our Executive Director, then you were rude to her when she requested you take it down a notch. (We have documentation of that, also documentation and screen shots of the exchange on our Facebook page.) Your child's picture was never submitted for our calendar and was not in it "2 years in a row" as you state above. We are not going to call you a "liar" but state you are mistaken. Again, you have never used our services (aside from our Facebook page) but harassed our Executive Director on Facebook and our Facebook page. That we have documented and it was reported to Facebook. And we note your statement, " I will be posting the facebook messages under a different name as you can not write a second review." from above, states it all, what other name? Most of us have one name not more than one. (You can write more than one review here.) For the record, Breath of Hope was not founded by one individual but a group of families.

3 Natalie40

Client Served

Rating: 5

Elizabeth has helped me far more than I can describe here. BOH sent me a box of gifts when I first found out my son had CDH. She helped me through the entire pregnancy, talking me off the edge, helping me with questions to ask, and being a good friend. Even when Isaac only lived 9 days, she helped us through that too. BOH has been a huge help to not only me but my family as well. Thank you!

1

Client Served

Rating: 5

I found Breath of Hope after some Internet research upon finding out our baby was diagnosed with CDH. Breath of Hope has been such a huge support for us. They sent us a NICU care package with a lot of information about CDH and what to expect in the hospital and the team has been an invaluable resource. Breath of Hope and Elizabeth send us positive wishes almost daily since we've been in the hospital sharing our updates with the Breath of Hope support group community. Whenever I have a question I don't hesitate to reach out and ask for advice. I am so impressed with the dedication Breath of hope has to helping families navigate through this difficult time and I'm so thankful for their support!

1

Client Served

Rating: 5

I am expecting my first grandchild on Aug 1 2013. He has CDH. The 20 week ultrasound is when we learned of his diagnosis. We immediately began searching the internet for any information we could get. We were so happy when we came across Breath of Hope! We have connected with such a wonderful support group through BOH. We are so grateful for them and the work they do! Connecting with other families that have experienced this journey has helped us get through this time! My grandson arrives in 5 days and I know we will continue reaching out to this great organization!

Thank you so much BOH for all you do,

Client Served

Rating: 5

My son was diagnosed before birth with a CDH at 25 weeks. Breath of Hope was the only site we found where things were reassuring, and more loving. Elizabeth was amazing from the start and still is, the care package she sent was wonderful. I emailed her with every question I had, or just to have someone to talk to who I thought understood me. She followed my sons progress from birth threw surgery and beyond. We are home now and my son is doing great, but going threw this process I think would have been much harder with out the love and support provided by Elizabeth and everyone in my CDH family I met threw the facebook page.

Client Served

Rating: 5

I found BOH while I was still pregnant. We went in for our 20 week ultrasound and were told our baby had CDH. BOH was the first website we found and the information on the site was so much more reassuring then other sites we had found. I didn't really get too involved until after my son was born and home. It has been a great resource and Elizabeth is so incredibly helpful in times of need. I have found great support through this site. I would recommend it to others for sure.

Leslie G.

Client Served

Rating: 5

My son, Aiden was diagnosed March of 2011 with CDH and passed away August 2011. Elizabeth was wonderful and so helpful and still is so supportive. Thankful for her!!!

Client Served

Rating: 5

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

1 Kathy O.

Client Served

Rating: 5

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.

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Client Served

Rating: 5

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.

Dixie A.

Client Served

Rating: 5

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.

1

Client Served

Rating: 3


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.

Comments ( 1 )

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elizabeth21 07/09/2012

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.

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2

Client Served

Rating: 1

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.

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elizabeth21 06/11/2012

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.

sydneycdh

Client Served

Rating: 5

I never heard of CDH before my daughter was diagnosed at 19 weeks gestation. That night I searched for information and answers on the internet, when I found BOH. This organization gave me information on what to expect and what to ask the doctors, but more important, they gave me hope! There were many long scary nights in the NICU after my daughter was born, but the support of this amazing group got me and my husband through it with most of our sanity intact. I recommend this organization to anyone having a baby with CDH for information and support. The other members have very special places in my heart. It has been 3 1/2 years since my daughter's birth and we have been very fortunate that she does not have many issues now, but each one of these members are so, so supportive of her and our family!!

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1

Client Served

Rating: 5

when my husband and I found out that we were carring a baby girl with CDH we were devastated. I found BOH on line and could not believe the love and support that they gave us. As the time to having Sydney grew closer the love grew stonger. They gave was so much information about what to expect and what to ask the doctors. it was a very difficult time in our lives but we would not be able to get through it withoput Breath of Hope. They gave us hope when we thought we had none.

Carrie A.

Client Served

Rating: 5

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.