Our organization is 100% volunteer driven at this time. If you would like to donate your time, talent, or skills, please see application below.
Meet Our Team:
I’m Ali and back in 2008, my son Brayden Alexander was born and diagnosed with hydranencephaly. At the time, there was little information available online and what was available was far from optimistic. By the time he was born, we had already been told too many times that he was not going to live a quality of life worth living and in fact, we were encouraged throughout my pregnancy to terminate his life. Needless to say, Brayden had other plans and despite what the medical professionals had prepared our family for – he lived an amazing little life until he died in 2012. As for myself, I’m very fortunate to have been given the opportunity to do something more for families across the globe who are on this journey with a diagnosis that carries a misconceived grim prognosis. Plenty of years of diverse education and intentional living gives me the ability to use my powers for good in raising awareness of the possibilities that exist for life and the opportunity to build strong parent advocates that work to ensure every human being with this rare neurological condition has every opportunity live the best quality of life possible. Our family, which includes my husband, James, and our kids Bella, Ady & Seth; has lived in Northern New Mexico since late 2018 - however, the Navy has allowed us to be residents of: Missouri, South Carolina, Virginia, and Washington prior to our relocation here. I also have a location independent wellness business “Maksika Well” which is Sanskrit for bee where I specialize in post-traumatic healing topics, and am a Court Appointed Special Advocate working with infants, children, and youth in the foster system.
I’m Shylo. I have been volunteering with GHF off and on since 2013. I connected with the founder, Ali's family and became aware of this condition the evening of November 15, 2012 when her son Brayden died. The family support group I was volunteering with made meals and provided support during times that people needed it the most. I thank the Lord every day that I was able to help Ali and her girls through that most difficult time, especially the first days while her husband was at sea. It wasn’t until some months later that we also worked in volunteer roles together through the family readiness group that our husbands’ Navy command provided. Cory is my husband and we raise 3 boys together. He protects the community we live in here on the East Coast and we spend a lot of time outdoors together. I’ve been honored to watch Ali’s incredible passion grow, even after the passing of Brayden, as she had the determination to advocate for a better life for other kids like her own. I was drawn in by that, her passion to do good for others, and wanted to help by designing graphics for social media. I briefly served in a position on the board of directors and lent my experience with marketing and brand awareness to a great cause that is doing so much for families around the world; and am now honored to serve on the staff for GHF as Volunteer Coordinator starting in August 2021.
CFO/CEO of the blended McNear family. I have been married since 2007 to someone who makes me laugh every day and we parent four kids all in different stages of their life, as well as one super spoiled fur baby named Giblet. But the reason I am in the GHF world is because of my youngest son Maddox. Even though Maddox has not been formally diagnosed with hydranencephaly, if you looked at his MRI, you would see an image that looks as such. It was discovered at our 20 week ultrasound that he had severe hydrocephalus, something I had never heard of before. I was given all the grim diagnoses, but after an uneventful c-section he came into the world crying the most beautiful cry. We were told he might live to be 3 and to just take him home and love him, and LOVE him is what we have done. As of 2021, he is 12 and doing wonderfully. I have been following Ali and GHF since Maddox was a baby. I will always remember the day I found the GHF page and was in awe of how much Brayden reminded me of Maddox. The wisdom, strength and courage I have seen in this group, is what helps me navigate this craziness we call life now. To say our life is complicated is an understatement. But I wouldn't change any second of it; and I'm fortunate to be able to share my knowledge and lend my skills in my role as Administrative Assistant starting in August 2021.
I’m Amanda and I am a social worker and grant writer at a statewide human services agency in Iowa. I work with prenatal parents and families with kids under the age of 5. I am a former military spouse who is now settled back into our home state. I have been married to my husband Conor since 2006. We have a son and younger daughter. We also have 3 dogs to add to our chaos. I became involved with GHF after meeting Ali, James and Brayden in Charleston in 2008 not long after Brayden was born. I am hoping to use my grant writing skills to assist with finding and applying for funds. I have experience with a cousin with Cerebral Palsy who has been in a wheel chair for 26 years, so I am hoping to explore some accessibility options for wheelchairs for families as well.
I'm Melissa. I am mom to 2 boys with special needs & have been wife to my active duty Navy husband since 2002. I have worked as a Paraeducator on and off since around 2006, so have extensive knowledge and compassion for families with a member who has additional medical and/or educational needs. Since 2012, I have been the founder of Kitsap Accessible Family Events (KAFE) in Kitsap County, WA and that's how I connected with GHF's founder, Ali. I officially met her before that, but we didn't become friends until KAFE was being rebranded a few years ago and she graciously said that GHF would be our fiscal sponsor. We have worked closely together on a variety of community fundraising and awareness projects over the years; particularly in the realm of inclusive programs and events to promote the opportunity for families to receive accommodations for regular events that otherwise wouldn't be accessible to them: sensory-friendly holiday events, movies, and awareness-building events.
Hi, I’m Katie! We connected with GHF shortly after my oldest son, Johnny, was born and II have been a volunteer in some capacity since shortly thereafter. The families we connected with immediately restored the hope that was stripped away from us when we received Johnny’s diagnosis of hydranencephaly. Seeing the pictures of the kids smiling and LIVING life changed our whole outlook for his life and really gave him a fighting chance. I believe in the power of “seeing is believing” and think that photos of our children speak volumes about the *true* possibilities of Hydranencephaly. I like to edit photos into inspirational graphics and hope to help share with the world all the possibilities and capabilities our kids have. There’s a whole lot of hope that needs to be restored for families that have been stripped of it like we were, and I hope to help reach those families and let them know that they’re not alone and help them to find reasons to “Believe in the impossible!”
Hello, my name is Kristy. Mom to a bunch of kiddos; bio, adoptive and guardianship (two with special needs). I am also an angel mom to 3 biological daughters with Hydranencephaly (Bailey, Bryanne & Bristol). I did not find GHF until Bailey turned 14 iin 2012, and the other two had already gone to heaven prior, and unfortunately, we would lose Bailey three weeks before her 15th birthday. It was so wonderful to finally connect with others who were dealing with the same diagnosis, struggles and amazing achievements. And then a year later it was nice to have the Bereaved Family group for support. My girls have and still are teaching me so much. I am absolutely blessed to be their mother and they have made me a better person. I help GHF to remember and celebrate every child, whether it’s their Birthday celebration here, or in memory of that day, as well as remembering their life each year on the day it ended here on earth. I send cards through the mail to let these families and children know how very treasured and remembered they are. I love being a part of GHF and the encouragement and support they bring families.
My name is Amanda Garcia. I found the Global Hydranencephaly Foundation in 2011 when my son Abel was born. I was searching for something that was going to give me hope because all I found was what doctors were telling me, which was that the condition is not compatible with life. I reached out to Ali and found a wonderful group of mommies like me and babies like my sweet boy. My son joined the angels 9 months after he was born and I am so grateful to continue being a part of this wonderful foundation. I am lucky to have had Abel; he showed me strength and taught me to be strong. I do have 4 other children now 6, 3 and two 18-month-old twins, so I'm pretty busy but love to help others when I can. I have worked for 5 years in banking and 10 plus years in customer service. I have a CNA license and now I have my little business of making custom images with vinyl for all sorts of things and look forward to creating memorable pieces for the families that GHF serves. I have also expanded my volunteer services to include social media content management and am looking forward to watching GHF grow moving forward.
Hi, I'm Mellisa. I'm mom to Lia, who was born with hydranencephaly in 2007 and lived almost 2 extraordinary years. I've been with GHF right from the beginning! I am a residence manager at a home for adults with autism and other development disabilities and a Special Olympics coach. In the last couple of years, I decided that life changes needed to be made, starting with my health. I began to run and joined a women's soccer league where I finally started to be social and made fantastic friends. I've discovered that I live in the most amazing place and started hiking in the Catskill mountains in Upstate New York, which is where you can find me on most sunny days, and has proven to be extremely therapeutic. I'm hoping to share my love of the outdoors with all of you and start an outdoor adventure program for families through this organization as well as a hope to connect with other organizations to support and sponsor these events moving forward.
Hello! My name is Christa Elliott and I got involved with the Hydranencephaly site in about 2016. Our daughter Emily was born March 28, 2014 and 5 days after she was born we were told about her diagnosis. The reason we didn't know while I was pregnant was that I didn't know I was pregnant and had her at work. We did our research and came across the Hydranencephaly website and read all the amazing stories of the children and how some were living long lives and others were here for a short, but wonderful time. I really wasn't on Facebook so much at the time but Blair (Emily's dad) was and he found the Global Hydranencephaly Foundation and we both joined. Sadly, June 14, 2017 Emily passed away and I now am a member of the Hydran-Angels group; a good group but not one that is easy to join. Every week I put Wordless Wednesday out for everyone to share and remember the Angels we once held and cared for. As for my skills, I am compassionate about the Family-to-Family (F2F) Resource Group and the Bereaved Families Group and look forward to the opportunity to build engagement in both groups to provide a place for families to lean in to on every step of their journey.