Duty Station: Fort McNair
Number of Deployments: 2
Number of PCS's: 7
Share your military spouse story:
I feel like my military spouse story starts similar to others, I met my husband in high school & we got married when he came home to do hometown recruiting. That was 19 years ago & here we are, he’s still active duty & we have 3 children ages 20, 17, & 9. I think this is where our story starts to shift from that of others. When our youngest son was 2.5, & just after my husband deployed, our son was diagnosed with a rare life-threatening syndrome. That’s when I learned what it was to be an EFMP family. By the time we decided we wanted to grow our family we knew that we would rather adopt a child with disabilities than give another child the same disease our son has. We waited 5 long years before the call came, there was a baby girl waiting for us in Hawaii. We knew she was sick & I booked the first flight I could to get her & bring her home. Within days she was admitted & would undergo open-heart surgery. We PCSed to JBLM & it was here, I realized as families we needed change. EFMP isn’t talked about, there is a stigma to it, families like mine are isolated & need support from each other. This is where the idea for a nonprofit just for EFMP families came from. Life calmed down to a new normal & I found KHI & started assisting with medical research for one of our daughter’s medical conditions, desperate for a cure. In 2020 we found ourselves on orders to Los Angeles. Like most EFMP enrolled families, we set about researching medical care & local schools for our children. Within months our daughter had an MRI that would shake our world again, they called to say she has MoyaMoya. Just 2 days later, our daughter suffered a catastrophic stroke that left her entire right side paralyzed, the doctors unsure if she would make it. This was the defining moment of our lives–we agreed we’d continue to advocate for her and others like her, as a legacy to her life. She made it through and now that legacy is one we all fight for. We will change the world in honor of her.
Share an example of your leadership experience within the military community:
Leadership in the military spouse community comes in so many forms. I took it as my responsibility to be a guiding light for all military families enrolled in EFMP. I joined every platform that I could to elevate my voice about EFMP. I joined Little Lobbyists as a founding board member & advocated for access to Medicaid, I joined Tricare for Kids as a parent advisor & participated with any organization that would elevate this platform. When I founded Exceptional Families of the Military in 2020, I created a platform for all EFMP connected families to be heard. We are EFMP families ourselves & have 18 online support groups with about 7,000 EFMP family members DoD-wide, with an additional following of approximately 13,000 families across the remainder of the platforms & our Public Facebook page. We provide direct 1:1 support, peer-to-peer support groups, & also work on legislative priorities on behalf of our families.
Describe your involvement in the military community:
When time allowed I’ve volunteered my time in the military community in many ways. Volunteering as the assistant volunteer coordinator for the installation we were stationed at, as an FRG Leader at multiple duty stations. Together with my spouse, we have volunteered to plan, coordinate and put on multiple Christmas parties for the units that he has served in. This included our whole family spending Thanksgiving Black Friday shopping for gifts for the children that the unit couldn’t otherwise afford to provide. When Hurricane Katrina struck Lousinanna my whole family and I spent hundreds of hours sourcing spare medical supplies from military families. We picked them up, assisted with cataloging and packing them to send to families in need.
Describe how you support your community:
I’ve supported my community in the only way I know how to. By advocating to bring the military and civilian communities together around issues that relate to both. In 2019 I came across the newly founded patient organization Ketotic Hypoglycemia International. My daughter had been diagnosed with Ketotic hypoglycemia years earlier and I knew I need to help find a cure. Within months I realized there was a large number of military families affected by IKH and we were not all getting access to the same medical supplies and treatment. Through my work with KHI and EFM, I have advocated for equal access for these rare conditions. In Early 2020, I realized there was a correlation between a number of children in the Down syndrome support groups I was in and KH. After bringing it to KHI the scientific advisory board agreed I may be onto something and we launched an online survey whose results would be published in JIMD Reports and would be the Catalyst for medical trials.
What do you advocate for? Why?
I advocate for 2 platforms–EFMP Families & families affected by Ketotic Hypoglycemia. I’m guessing by my prior answers a lot of the why’s are explained. I advocate for EFMP enrolled families so that the next generation does not have to go through what we have. I advocate for EFMP reform because I believe the military can & should do better. I advocate for respite care for both military children & adults because I believe that a supported family equals a mission-ready service member. I advocate to destigmatize EFMP enrollment so that families aren’t worried about ruining careers & can instead focus on caring for their EFMP enrolled family members. I advocate so that children & adults with rare & undiagnosed medical conditions, such as KH have access to the treatment protocols & medication they need because the medical world & the understanding of genetics change so quickly that it’s hard for policies to follow. I advocate because I believe in a better tomorrow.
How have you spread the message of your platform/advocacy?
I’ve spread the word on these topics in many ways. I testified before Congress on February 5th, 2020, in a hearing titled “Exceptional Family Member Program--Are The Military Services Really Taking Care Of Family Members?” I then participated in the Congressional Military Family Caucus - 2021 Summit and spoke to my family’s personal and tragic experience with EFMP failing us resulting in our daughter almost paying the price with her life. When the occasion has come up I’ve also worked with reporters on several articles specifically about EFMP and our families. My work on Ketotic hypoglycemia has also been popular in the media with me doing an article with Today.com which went viral. In Denmark, I’ve been front and center in many of the interviews on the topic despite not being present in them due to the language barrier. I’ve published in two medical journals JIMD Reports and Orphanet Journal of Rare Diseases. (articles and journals can be found on my LinkedIn page)
What do you hope to accomplish with the AFI Military Spouse of the Year®
I will use the MSOY platform to bring attention to the issues near & dear to my heart. I see the MSOY title as one that will open the door not just for me but all of the families I represent. When I created EFM, I thought long & hard about what our slogan would be, I came to “one community, one voice” & I knew this was it. Together we are a community & together our voices are stronger, I will use this platform to push for a seat at the table for EFMP families in spaces there isn’t one, I’ll continue to train future advocates & use the platform the elevate their voices as well. For families, especially military families affected by KH I will continue to push KH in the media for our families so that we have funding for research our families need. I want the world to see military spouses bring more to the table than they realize, we are strong–I am an advocate, researcher & I have ties that stretch the globe. I wouldn’t be where I am today without the people I’ve met as a military spouse
Austin is the embodiment of what you think of when you picture an MSOY. Despite nearly losing her daughter this last year, she launched a nonprofit, Exceptional Families of the Military, which currently serves roughly 14,000 EFMP families. She has worked tirelessly to advocate for families with a loved one with a disability. Not only as a founding board member of Little Lobbyists but as a parent advisor to the Tricare for Kids Coalition, ultimately leading her to be asked to testify before congress on EFMP. She used her family’s experiences as an EFMP family to create NDAA language for EFMP families. She has a solid background in the media with many articles being written featuring her. A google search of her name will render countless articles and videos of her advocating for families. When she’s not advocating she assists families as they navigate military life with a disabled loved one, or creates videos and web content for EFMP families.
- by Rebecca Emerson
Austin is a role model: caring, compassionate person who helps others despite adversity in her own life. Austin founded a nonprofit Exceptional Families of the Military, is a full-time mom & carer to her children while supporting her Military spouse. Her daughter has had many medical hurdles the family faced nearly losing their daughter. Melanie has Downs syndrome & Hypoglycemia. Ketotic Hypoglycemia a rare & poorly understood condition she set out to advocate for Melanie but also every child & adult with KH via non-profit Ketotic Hypoglycemia International placing leading patient-driven research at the forefront. Noticing a link with families reporting Hypoglycemia in the DS community. An advocate for all she brought this to the KHIs scientific advisory board. As a co-author on KHIs game-changing journal article on DS & hypoglycemia. The research Austin began has been picked up by the Today Show & many other news outlets. She is a voice in the DS & KH community & military families.
- by Rebecca Futers