Global Hydranencephaly Foundation

Rating: 4.95 stars   19 reviews

Issues:

Location: PO Box 1150 Seabeck WA 98380-9800 USA

Mission: The Global Hydranencephaly Foundation is a family driven nonprofit organization dedicated to providing families faced with a diagnosis of hydranencephaly, the opportunity to help their child live the quality of life he or she deserves. The family-to-family resource network is the foundation of this mission; an ideally structured, multi-faceted community for the dissemination of invaluable information, sharing of effective care management strategies specific to the unique circumstances a family faced with diagnosis of this rare neurological condition may encounter, and individualized, life-long support. Emphasis is placed on the development of empowered parent advocates, strengthened by availability of comprehensive information, geographically tailored resources, and a confident awareness of the rights children have to quality, compassionate care without discrimination. We embrace the opportunity for continuous growth through the expansion of additional collaborative partnerships with like-minded organizations and reputable community businesses. Through community-based awareness campaigns and the planned infiltration of the medical community, we aim to conquer the misconceptions that exist surrounding this diagnosis and portray a clearer picture of the possibilities that exist for these children; giving multiple reasons to “Believe in the Impossible!”
Results: GHF is a registered 501(c)(3) nonprofit organization incorporated in the Commonwealth of Virginia on June 14, 2011. We began doing business as Global Hydranencephaly Foundation in December 2011 under the parent corporation of Brayden Alexander Global Foundation for Hydranencephaly; registered as a foreign entity to do business in Washington state in October 2012; sponsored the first EVER global hydranencephaly conference in Dallas, TX the weekend of June 14-16; working to build our network of families and have reached families in the US, Mexico, Canada, Brazil, Africa, Greece, Philippines, Belize, Australia, Ireland, United Kingdom, Portugal, and more. Recognizing our SECOND Hydranencephaly Awareness Month this June 2014 with several events, including our first Global-Wide Walk/Run for hydranencephaly awareness.
Target demographics: families of children with a diagnosis of hydranencephaly, or those undiagnosed but possessing of similar traits/characteristics, across the globe
Direct beneficiaries per year: network over 400 families across the globe and provided several new families with some light during the darkness of diagnosis. Individualized support is our specialty; and in providing this, we are learning in what areas our efforts can be of best benefit.
Geographic areas served: globally
Programs: Family-to-Family Resource Network; equipment lending closet "The Hive", patient advocacy for families navigating the medical system, support, information, and a long list of individualized resources making it possible for families to provide their child with the best quality of life possible!
2014 Top-Rated Nonprofit
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More Info

EIN 45-2113600
573-280-2412
http://www.hydranencephalyfoundation.org
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Community Reviews

Rating: 5 stars   Featured Review

GHF is a non profit whose goal is to spread awareness about Hydranencephaly and they do exactly that and more. My daughter had an in-utero diagnosis and was born with Hydranencephaly. The information that I found was grim at best and heartbreaking. I started finding other families that had children with this diagnosis and began to have hope but there was not a lot of information available. Global Hydranencephaly Foundation started to form shortly before my daughter passed away at the age of 2. I have seen this foundation grow and help so many families, old and new. They are working to change the way that medical professionals view Hydranencephaly so that new families have support, correct information and hope. The support from this amazing group of people never ends. Every Angel is constantly remembered and Angel Parents give families advice and talk about their experience. I was lucky enough to attend the first ever Global Hydranencephaly Foundation conference as an Angel Mom and it was like going to a family reunion. Hydranencephaly families are so incredibly knowledgeable and supportive of one another and always looking for new ways to help other families. I am proud to be a volunteer for this incredible foundation!

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Rating: 5 stars  

1 person found this review helpful

We adopted our son, Logan, as a newborn with hydranencephaly. We had never heard of it before, but because Logan is now 14 years old, we have lots of experience. We love being able to learn from others as well as share our experiences with new parents who have recently heard of hydranencephaly for the first time. I can't begin to express how much it means to us to be able to stay in touch with other families who are dealing with the same problems and prognosis that we deal with every day. It's good to know that you're not alone!

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Rating: 5 stars  

1 person found this review helpful

My nephew, Jayden, was diagnosed with Hydranencephaly and Macroencephaly shortly after birth in Harare, Zimbabwe. For anyone, this is a difficult diagnosis to understand and accept and we were advised by his doctors to "just ignore him till he dies as he will be nothing more than an irritant in our lives"!!! This is a baby! A life, that we were blessed to be given to look after. We had little help with knowledge and no support until we came across the Global Hydranencephaly Foundation. They have reached across the ocean between us to support us in every way possible and given us hope and sent gifts for Jaydens special needs whenever possible. For example, Jayden will be asleep and suddenly jerk awake unless we physically held him close whenever he slept, and th Global Hydranencephaly Foundation suggested we get a weighted blanket for him... wait, a what? We had never heard of such an item and things like this are not available in Zimbabwe. After we requested a pattern to make one for Jayden, the GHF sent us a weighted blanket through the post, which has really helped. We have received a few other items from them as well. Please support this amazing non-profit so they can assist families WORLDWIDE just like us.

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Rating: 5 stars  

1 person found this review helpful

I want to thank Global Hydranencephaly Foundation for all of their dedicated and hard working people. They truly have been a God-sent for so many families struggling to find a positive side to this very grim diagnosis. My personal favorite is all the love and support GHF shows for it's "children" and families!
Thank you for all of your hard work, dedication and love that you show daily!

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1 previous review
Rating: 5 stars  

When our adopted daughter was 7 weeks old we got the diagnosis of Hydranencephaly! The Dr wrote her off his book immediately!!! All he said to us, while looking at our healthy 7 week old, was that she would not live to see 1 year of age! She would never show emotion, she would never recogize any one she is ever around!! She smiles so much now, laughs out loud, and KNOWS who we are!!! We were told by friends NOT to look up Hydranencephaly on line!! All the information was horrible, very grim, very much not a friendly tone at all!!
Then we found our FAMILY from the Global Hydranencephaly Foundation, who are always so supportive, who have so much information, who offer advice whenever anyone asks for advice. They share the good, the bad and there is always someone who has been through what you are going through!! This wonderful group is our family, and they go through the same things we do! We have a much better understanding ofhow to care for our special needs, hydran daughter! We learned alot from them about the type of equipment we would need for her, in the future! It is so wonderful to ask questions and know we have an answer coming soon!
To be totally honest, we never make a decision on anything concerning Serena, until we get advice or confirm it with our Hydran Family first!! They are awesome and have been our backbone for the last 3 1/2 years! :)

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  

2 people found this review helpful

Global Hydranencephaly Foundation continues to give hope to thousands of family members of individuals with hydranencephaly everyday. GHF provides inspiration and countless resources for those who previously felt only desperation and despair. No longer do families need to feel alone and without answers. GHF has truly touched THOUSANDS. Words cannot express the gratitude GHF deserves. You truly are one of a kind and bring new meaning to words like “life”, “help”, and “support”. Thank you.

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Rating: 4 stars  

1 person found this review helpful


When I found global hydranencephaly foundation, my son was already a teenager, but the relief of finding other people in the same situation as us was great, the support you find, especially when he is ill, is great, and you can normally speak to someone who has been in the situation you are going through at the time, you can be totally open and frank, and know someone will reply without judging you. I am so thankful to everyone at GHF and really love hearing how their kids are keeping, and how they are coping, though it us very hard when a child gains their wings, especially when you have been through it yourself. The good thing about it being world wide is no matter what time day or night there is always someone their to help, comfort, advise when you are feeling overwhelmed, or just need to chat and boast about something your child has done, and everyone rejoices with you!! I dont know how I managed with my sons the years before I discovered GHF

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Rating: 5 stars  

1 person found this review helpful

I am honored to be able to Volunteer for the Founder to help her vision to help other reach out and spread the word about Hydranencephaly.

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Rating: 5 stars  

1 person found this review helpful

When our daughter, Charlie, was diagnosed with Hydranencephaly we were given no hope whatsoever. No hope for her to live, no hope for her to have any quality of life, no hope that she would be aware of her surroundings or even to know who we are as her parents. We were discouraged from seeking out information online as her doctors were afraid it would lead to "false hope". Eventually, I began searching and found GHF. It was one of the best decisions I have ever made. We were instantly welcomed and accepted as family. Any questions, fears, concerns or triumphs we had were answered with enthusiasm. Charlie is now four years old and remains a fighter, she has scared us so many times, but with the help of other families and their input I feel confident that any situation that may arise can be conquered with the knowledge and insight of our amazing Hydranencephaly family. The support is unlike any other, we are so blessed to have such an amazing group of people in our lives. Hydranencephaly is a devastating diagnosis, but with a foundation such as GHF, it is a miraculous experience that few people have the privelege of understanding. We love our "bee" families so wholeheartedly, that each one has become an integral part of our lives.

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Rating: 5 stars  

1 person found this review helpful

My angel Brayden was and still is the brightest star in my life. He taught me to always slow down and take one day at a time. My grandson is my superman and his mommy is his robin, Alicia will be there for all, to help and by the families.

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Rating: 5 stars  

1 person found this review helpful

I am proud to have a 14 year old daughter with Hydranencephaly and we love the support we get from other families and also being able to share what we have learned with other families with children with Hydranencephaly. We are so thankful for this foundation. They are a great resource to have and we wouldn't be this far without their support.

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1 previous review
Rating: 5 stars  

1 person found this review helpful

Global Hydranencephaly Foundation has given me the support I need to help me take better care of my child with hydranencephaly. Whether its seeking medical advice or venting about situations they are always there for me. It is nice to be able to return the favor when someone else is in need as well. We are like one big family looking out for each other and sharing the same journey. No matter what stage we are in in the hydranencephaly diagnosis I can always depend on Global Hydranencephaly Foundation to be there for our family.

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

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