Are You Worried About Your Baby's Development - Enroll in Project FIND-OUT - You May Qualify for Free Whole Genome Sequencing

[00:00:03] I'm Effie Parks. Welcome to Once Upon A Gene, the podcast. This is a place I created for us to connect and share the stories of our not-so-typical lives. Raising kids who are born with rare genetic syndromes and other types of disabilities can feel pretty isolating.

[00:00:20] What I know for sure is that when we can hear the triumphs and challenges from others who get it, we can find a lot more laughter, a lot more hope, and feel a lot less alone.

[00:00:31] I believe there are some magical healing powers that can happen for all of us through sharing our stories, and I'll take all the help I can get. Once Upon A Gene is proud to be part of

[00:00:45] Bloodstream Media. Living in a family affected by rare and chronic illness can be isolating, and sometimes the best medicine is connecting to the voices of people who share your experience. This is why Bloodstream Media produces podcasts, blogs, and other forms of content

[00:01:01] for patients, families, and clinicians impacted by rare and chronic diseases. Visit bloodstreammedia.com to learn more. Hello, my friends, and welcome to the show. Thank you so much for turning this amazing broadcast on right now. I'm so happy you're here.

[00:01:16] And thank you for spreading the word about Once Upon A Gene. Thank you for always sending so much love and for connecting people who need it to this show. Thank you so much for writing

[00:01:25] podcast reviews. I'm so thankful when you do that. If you haven't, go ahead and head over to Apple, leave the podcast a review. It really helps families decide which kind of content they want to

[00:01:37] listen to when they get that really personal review from you. So thank you so much. And also, thanks for hanging in there. I know I took my very first break of my life. I've been really busy

[00:01:46] adjusting to summer, if you know, you know. I just returned from Slovenia for our second international conference. I'm melting inside, still absorbing it. So I will have an episode and update on how incredibly amazing that was. And then I went straight to Minnesota to attend the

[00:02:01] Dravet Conference, which was just so beautiful and heartwarming. And I got to meet so many families. I'm so thankful to everyone at the Dravet organization for being so welcoming, so calm. Just there was just such beautiful energy there like there always is at family conferences.

[00:02:17] But I was really honored to be invited. I collected some stories and you'll hear them in a couple of months. So shout out to Dravet for a job well done. Today's like an action packed

[00:02:29] sort of call to action episode. OK, so if any of you follow me on Instagram, you've probably heard me talk about Project Find Out. But I wanted to make a short little episode here to make it

[00:02:40] really easy for you to share. Really, if you're a parent, grandparent, caregiver, you have friends that are having kids, this episode is shareable on even just your regular Facebook. Share it

[00:02:50] for anyone who might grab onto it who's having a baby. Share it in your symptom groups. I'm talking about your feeding tube groups, microcephaly, hypotonia, autism, epilepsy. Share it in all those

[00:03:02] groups because honestly, a lot of families just don't know this until it's too late. And a lot of families also get really, really mixed information from their professionals, but especially from Facebook groups. And we all know the wait and see stuff. We all know that you'll

[00:03:17] catch up stuff. We also know that like what you don't know, you just don't know. And so peculiar things happening with your baby, you just might not really understand or notice, especially if you haven't had a kid before. So let's really get the word out about this. It's

[00:03:32] so important to have a diagnosis. We all know that. So again, please share this episode, put it out there, just get it out there so these people can find it. OK, so what is Project Find Out?

[00:03:44] Project Find Out is available only in the United States, and it is for babies from age three months to 12 months who are showing symptoms such as feeding issues, abnormal movements, developmental delays, or if they've ever had a NICU admission. OK, Project Find Out offers

[00:04:01] free genetic counseling and free genetic testing to these eligible families, which we all know is so, so crucial to the child's health and the whole entire family's well-being for sure. Here are some key points for Project Find Out. Again, free genetic testing and counseling.

[00:04:17] They get a detailed genetic testing report. They get connections with specialists for further guidance if they get an answer. And of course, they get to contribute to important research that can benefit all of our families and future families to come. So participation is very simple.

[00:04:33] It's just a few steps. You go to projectfindout.org and you find the button that says enroll. You complete a pretty quick online assessment. They collect a sample. It's a swab in the cheek so you

[00:04:45] don't have to worry about the blood necessarily and receiving your results through a post-test counseling session. So the project team assists you every step of the way, and they really make sure that you get the support you need. You know, they don't just leave you out into the

[00:05:00] into the depths once they help you find an answer. So I want to break down the acronyms. Project Find Out. So find out F, feeding or gastrointestinal issues. This includes difficulty sucking, frequent spitting up, swallowing problems, constipation. I, the

[00:05:20] inability to suck or issues with movement such as involuntary movements, repetitive shaking, rapid jerking of muscles, abnormal posture, coordination issues. N, neonatal intensive care unit, the NICU, if they had an admission at any time there. Any NICU or ICU admission for

[00:05:42] any reason regardless of the duration. D, developmental delays, if they're missing milestones in two or more areas such as communication, motor, problem solving, or social skills. So consult your pediatrician or the CDC milestone checklist for guidance on what

[00:06:02] you're seeing or not seeing there. O, other concerns. Okay, this can include congenital malformations, atypical growth, maybe you've been referred to a specialist, or any sort of like abnormal physical structures. U, unprovoked seizures, one or more unprovoked seizure. T,

[00:06:22] tone issues. We're talking low muscle tone, that floppy baby, poor head control, poor reflexes. So if your baby or a baby you know or the baby you don't know yet because you're going to share

[00:06:35] this episode is between 3 and 12 months old and exhibits any of these symptoms, please consider enrolling in Project Find Out. This is a crucial step into understanding and addressing everything early on for these beautiful kids. So to learn more about Project Find Out and to see if your

[00:06:54] child qualifies, again please visit projectfindout.org and share this information in your Facebook groups, in your next door groups, at your daycares, like I don't care just send it out. This link, boop boop,

[00:07:08] out into the world. Share it with your friends or anyone who might benefit because an early diagnosis and intervention makes all the difference, period. Anyway, super quick for you, sending all my love to everyone, especially the caregivers. Home for summer. I hope you can

[00:07:23] find bits in your day to take a walk, to get some alone time, to text a friend. Whatever you do, please make sure that you're giving yourself a little bit of alone time. Put your headphones on

[00:07:35] if you need to, like I have been living in all week and take care of yourself and reach out if you need a little support. Okay, take care. I hope you've been enjoying this podcast. If you like

[00:07:46] what you hear, please share this show with your people and please make sure to rate and review it on iTunes or wherever you get your podcasts. You can also head over to Instagram, Facebook,

[00:07:57] and Twitter to connect with me and stay updated on the show. If you're interested in sharing your story or if you have anything you would like to contribute, please submit it to my website at

[00:08:07] effyparks.com. Thank you so much for listening to the show and for supporting me along the way. I appreciate y'all so much. I don't know what kind of day you're having, but if you need a little pick me up, Ford's got you.