Nef Moncur

WNBA star A'ja Wilson is TIME's Athlete of the Year time-magazine.visitlink.me/KDOcFB

Were not just back— @athlos is taking over Times Square this year 💪 Long Jump in TIMES SQUARE OCT 9. Then join us and the LJ finalists OCT 10 at ICAHN. Get tickets now while you can!

📅 BREAKING NEWS: @athlos, the hit women’s-only track and field meet, will return to Icahn Stadium in New York City on October 10, 2025. The high-energy event hopes to build on its inaugural success with even bigger competition and entertainment. It has received early commitments for its 2025 meet from Olympic gold medalists @itsgabbyt , @brittanyshamere, @masai_russell, @Marileidy_P and @JCamachoQuinn. Last year, ATHLOS made an instant impact on the track calendar and attracted top talent by offering the largest prize purse ever for a women’s-only track meet. $663,000 was awarded in prize money across 35 athletes – with $60,000 going to the winner of each race. 📰 Read more here: citiusmag.com/articles/athlo…

When life hands you a diagnosis—we show up swinging. In January 2023, we got the news that our son, Ari, has a rare genetic disease—a progressive condition with no cure—and I stopped breathing. Here’s our story: 2020: I became a mamá at the height of the pandemic. My heart grew three sizes. 2021: Our Pandemic bubble. Early signs that something wasn’t quite right emerged, but doctors dismissed them over glitchy Zoom calls and rare, short hospital visits. 2022: A year of joy (Zoe was born), but our concerns wouldn’t go away. At two years old, Ari still wasn’t walking. Endless Google rabbit holes (pre-ChatGPT!) gave us no answers. Instead, we got this from doctors: “It’s a delay, not a disability.” “You probably carried him too much; he’ll catch up.” “Kids outgrow physical developmental delays.” They even urged us to stop searching: “Only 20% of parents get answers. Is this how you want to spend your time?” Our answer? YES. Without a diagnosis, Ari couldn’t access the medical support he needed—or the community we needed. So, we fought: Switched healthcare providers. Waited 5–10 months to see specialists. Paid out of pocket for genetic testing—against advice. January 23, 2023: The Call. The geneticist who had discouraged us from testing said: “I’m sorry. We found something…Charcot-Marie-Tooth.” All we heard was “Shark Tooth.” At first, I thought she was joking. It wasn’t. Charcot-Marie-Tooth (CMT) Type 1A affects 1 in 5,000 births and is 99% hereditary. Ari is part of the rare 1% of spontaneous cases caused by a de-novo mutation—one of just 70,000 cases in the U.S. Validation and diagnosis at last. Acceptance was instant—but the weight was crushing. My body responded with dissociation and panic attacks. I struggled to simply breathe. We had full-time jobs that helped us cover endless out-of-pocket costs (no diagnosis = no healthcare coverage). But even that wasn’t enough. Advocating for Ari (a polite way of saying fighting like hell) wasn’t possible while showing up for work. Something had to give. Historically, I’ve been the one to step back—to take the supporting role. I was ready to do it again, but the thought of leaving a job I loved felt like one more loss. This time, my husband, David, wouldn’t let me. He stepped up for our family by stepping down from his role as CRO. 2024: The Uncoiling. Testing continues to rule out other diseases. Slowly, I untangled from dissociation and integrated this new reality. What once felt unbearable transformed into quiet strength. @davidcapple became a Board Member of the @CMTAssociation and dove into the science. What he learned inspired him to start @SharkToothBio to develop a treatment for Ari. Slowly, I found myself breathing again. That breath came from time—and from the incredible people alongside us: - Family, friends, and teachers who show up in big and small ways. - Hazel, a wise 12-year-old girl with CMT: “If he wants to try something, even if you think he might get hurt, let him. Keeping him from finding his limits will hurt more than his condition.” - Jonah Berger, who lives with CMT and works at the CMT Association, and answered our cold email hours after diagnosis to share his inspiring journey of “walking like a cowboy.” But most of all, my husband. My partner. The one who gave me hope and air. While we can’t choose what happens, we can choose how we show up—and we show up swinging. If Ari can fall into the 1-in-a-million odds of developing a rare disease, I believe our family can beat the odds again. Shark Tooth Biotech is our fight—our hope—to find a treatment for the 1.6M people silently suffering from CMT without a treatment or a cure. My ask: If you feel compelled, check out @SharkToothBio and support our mission—or pass this on to someone who might resonate with our story. Every ripple matters 💜 While this is the post I never wanted to write—and feared most to share—I hope it makes anyone navigating “something” feel a little less lonely. It turns out that 8% of the general population has a "rare disease," up to 20% live with a disability—and everyone has “something.”e 2025: A chapter yet to be written. A journey toward light, community, and the path to the first treatment for CMT.