Rare Disease Advocate | Award Winning Podcaster | Speaker | Captain Connection | RareMama to my sweet, Ford, who lives with #CTNNB1 🦓
Seattle, WA
Joined November 2018
- Tweets11.5K
- Following4.1K
- Followers6.7K
- Likes85.8K
In the early years after a diagnosis, it's easy to become so focused on therapies, milestones, and the future that we miss the child right in front of us. Or maybe we're just not in the right place emotionally to get there yet.
My guest this week, Brandon Boyd, knows this well.
His 22-year-old son Ben lives with FOXP1 syndrome. Brandon spent years being told to “wait and see,” the next therapy might “fix” things. This was before families had the access to genetic testing, information, podcasts, and online communities we have today.
An ordinary moment at McDonald's eventually changed how he saw his relationship with Ben.
We talked about grief that doesn't disappear, how differently moms and dads experience it, and the joy that comes from learning to love what your child loves.
Brandon also wrote a beautiful book, Delighting in Ben, which I highly recommend, especially for dads.
Sponsored by @citizenhealth1 , whose new AI teammate, Ari, is helping rare disease families spend less time managing the mountain of information that comes with caregiving. From tracking symptoms and spotting patterns to organizing medical records and helping draft insurance appeals, Ari is built to take some of that work off your plate.
effieparks.com/podcast/foxp1
Effie Parks retweeted
Your parents won't see you grow old. Your partner never knew you as a child, and your children won't remember you young. You are the only person who witnesses every version of yourself. Take care of yourself, value yourself and love yourself. You are your lifelong companion.
Effie Parks retweeted
When we were kids, we thought the people around us would be there forever.
The neighbors who waved from their porches. The grandparents who always had time for us. The friends we thought we'd never lose touch with.
We never imagined a day when some of those familiar faces would exist only in our memories.
But here's something beautiful about getting older.
We begin to understand that the love people gave us doesn't disappear when they're gone. It lives on in the way we treat others, the stories we tell, and the little traditions we carry forward.
So tonight, think about someone who made your life a little better.
And tomorrow, try to be that person for somebody else.
Because the greatest thing we leave behind isn't what we owned. It's how we made people feel.
I'm glad we're growing older together.
Good night, my friends.
Effie Parks retweeted
What a privilege it is to be able to run, afford a gym membership, buy healthy food, pay your bills, walk on your own legs, see with your own eyes, think clearly, work every day, and push your body to become stronger.
Never take these blessings for granted.
Effie Parks retweeted
Our second product is called Blindsight and it will, as the name suggests, enable even those who are completely blind or have never seen to see.
It is ready from an engineering standpoint. Just waiting on regulatory approval.
I talked with Brad Levy, founder of @epilepsyawarenessday at Disneyland, about what families can expect at the expo, how to make the most of the two days, and why being in a room with other people who understand epilepsy matters. Brad shares the origin of the event, the sessions that help first-time attendees (including Epilepsy 101 and Understanding Your EEG), and practical tips for planning your time. The expo is free with registration. The event runs November 16–18.
Hope to see you there!
effieparks.com/podcast/epile…
This episode is sponsored by @citizenhealth1 and Ari, an AI teammate for rare disease families.
Effie Parks retweeted
Guys, I beg you to start being the person you wish to be. This study found that just 5 minutes a day of imagining your best possible self, for two weeks, made people noticeably more optimistic about their future. Picture who you want to be, then go act like them today.
Effie Parks retweeted
It’s sad to think features like these have survived centuries, thousands of years of human history.
Hooded eyes, aquiline noses, strong eyebrows, round cheeks, thinner lips, tall, larger built, square jaws, the very faces our mothers, our grandmothers carried, all of it stretching back to queens and peasants alike.
Features that have survived it all, seen it all, and all for you to be told now — well it’s just not attractive.
Imagine inheriting a face shaped by the entirety of human history, imagine being blessed with a beauty that has survived the many rises and falls of humanity, only to be told you now have to give it all up to the vanities of this generation. What worth is beauty without any history? What worth is beauty without meaning? What worth is beauty when it stops being something we recognize and instead becomes just something we manufacture?
Effie Parks retweeted
BREAKING UPDATE: SOME WONDERFUL NEWS OUT OF OREGON! 7-YEAR-OLD SCHOOL SHOOTING SURVIVOR IS OUT OF THE ICU!
Little Saylor Graham-Poarch, the 7-year-old girl who was critically injured in the horrific October 15 school shooting at Silver Rail Elementary School in Bend, Oregon.
SAYLOR IS OUT OF INTENSIVE CARE AND IS NOW IN STABLE CONDITION! ❤️
Her family confirmed the incredible news in a statement released Monday, October 26.
Saylor was one of the children inside a special education classroom when a 16-year-old former student opened fire, killing three young boys, ages 5, 8, and 11, along with their 25-year-old teacher, Megan Lambert.
Saylor survived, but her injuries were critical.
This precious little girl was already facing significant challenges before the shooting. She lives with CASK, a rare genetic condition that affects her development. She uses a wheelchair and relies on a tablet to help communicate.
And yet, those who know her describe a little girl with an incredible spirit and a beautiful love for music and dancing.
Now, nearly two weeks after the unimaginable tragedy, her family finally has some encouraging news.
While they acknowledge that Saylor has a long road to recovery, they are grateful that their little girl is still here.
Even in their moment of relief, her family has not forgotten those who lost their lives.
They expressed their heartbreak for the families of the three children and teacher who were killed and thanked everyone who has prayed for Saylor and supported them throughout this nightmare.
Please continue praying for Saylor. Pray for her healing, her recovery, and the strength of her family.
And please remember the families who will never get to bring their loved ones home.
Four innocent lives were stolen that day. We must never forget them.
But today, in the middle of so much heartbreak, there is a reason to celebrate.
Keep fighting, sweet Saylor. An entire nation is cheering you on. ❤️🙏
Effie Parks retweeted
This is a fantastic ad. Thanks for the idea, @aoc.
Settled - going with @SoFi.
@SoFi, Through my work at Once Upon A Gene, I’ve got a pretty big bad-ass community of rare disease families over here who are raising medically complex kids AND raising money for treatments and cures. If there’s a way to put that high-yield energy to work in this space, I’m easy to find. Let’s collab. 😎 #CTNNB1
This beautiful 7-year-old girl is part of our rare disease community. She lives with CASK syndrome and was critically injured in the horrific shooting at Silver Rail Elementary School in Bend, Oregon.
She is currently in the hospital fighting for her life. Her family is facing an unimaginable situation and needs support right now.
If you’re able, please consider donating to help them through this time.
gofundme.com/f/support-famil…
Effie Parks retweeted
Where your attention goes, your energy flows. When your attention is fragmented across the day's worries, past memories, the imagined future, the unanswered email, your energy is fragmented too. Most people are bleeding energy in every direction at once and have never been told that this is what is happening.
