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We are still in shock. We travel all the time and I have never experienced anything like this. We were sitting at our gate in Vancouver waiting for our Westjet flight to Los Angeles. We weren’t wandering around the airport. We were right there, wide awake watching people board. They called pre-boarding and the priority zones. Then Zone 3. We were Zone 9, so we waited for our turn. Then the line disappeared and we hadn’t heard our zone called. It all happened so fast. One minute we were waiting for our zone to be called. The next, we were being told the gate was closed and we had missed the flight. We explained that we had been sitting there the whole time. We did not hear a final boarding call. They never called our names. We were two minutes past the cutoff. People were still walking onto the plane. At one point, it seemed like an exception might be possible, but another employee stepped in and disagreed. We asked if there were any other flights. We explained how important it was for us to get there because we were travelling to a gala honouring our daughter, Lexi. Then the employee who had joined the conversation said they couldn’t help- it was an economy class ticket and “It’s not WestJet’s fault your daughter died.” We were so taken aback. We were just asking if there was another way to get to this important event. Felix was devastated. I was in shock. Then the most amazing thing happened. The Air Canada staff at the desk right beside our gate stepped in. We weren’t their passengers. They didn’t owe us anything. They would not benefit from helping us. But they listened. They looked for options. They helped us find another flight on a different airline. Just compassionate people trying to help. So we are still on our way. We are going to Los Angeles to help raise funds for the first-ever Blau Syndrome research symposium happening next month. Blau syndrome is the ultra rare disease that took Lexi’s life. It was Lexi’s wish to help find a cure and this weekend is a giant step toward making that happen. Thank you to the people at Air Canada who helped us when they owed us nothing. We will forever be grateful. ❤️ #aircanada
We are still in shock. We travel all the time and I have never experienced anything like this. We were sitting at our gate in Vancouver waiting for our Westjet flight to Los Angeles. We weren’t wandering around the airport. We were right there, wide awake watching people board. They called pre-boarding and the priority zones. Then Zone 3. We were Zone 9, so we waited for our turn. Then the line disappeared and we hadn’t heard our zone called. It all happened so fast. One minute we were waiting for our zone to be called. The next, we were being told the gate was closed and we had missed the flight. We explained that we had been sitting there the whole time. We did not hear a final boarding call. They never called our names. We were two minutes past the cutoff. People were still walking onto the plane. At one point, it seemed like an exception might be possible, but another employee stepped in and disagreed. We asked if there were any other flights. We explained how important it was for us to get there because we were travelling to a gala honouring our daughter, Lexi. Then the employee who had joined the conversation said they couldn’t help- it was an economy class ticket and “It’s not WestJet’s fault your daughter died.” We were so taken aback. We were just asking if there was another way to get to this important event. Felix was devastated. I was in shock. Then the most amazing thing happened. The Air Canada staff at the desk right beside our gate stepped in. We weren’t their passengers. They didn’t owe us anything. They would not benefit from helping us. But they listened. They looked for options. They helped us find another flight on a different airline. Just compassionate people trying to help. So we are still on our way. We are going to Los Angeles to help raise funds for the first-ever Blau Syndrome research symposium happening next month. Blau syndrome is the ultra rare disease that took Lexi’s life. It was Lexi’s wish to help find a cure and this weekend is a giant step toward making that happen. Thank you to the people at Air Canada who helped us when they owed us nothing. We will forever be grateful. ❤️ #aircanada
My content has been a little heavier lately, focused on rare disease life... so I figured it was time to lighten the mood with our little Cookie Monster. 🍪🤎 If you’re new here... meet my personal Cookie Monster. This level of excitement can only mean one thing... Cookies!!!! 🍪 Danny, as always, rallying the troops. And if you can’t tell... this boy absolutely loves his cookies. #MomLife #ParentingMoments #ChildhoodJoy #RealLifeParenting #FamilyFun
My content has been a little heavier lately, focused on rare disease life... so I figured it was time to lighten the mood with our little Cookie Monster. 🍪🤎 If you’re new here... meet my personal Cookie Monster. This level of excitement can only mean one thing... Cookies!!!! 🍪 Danny, as always, rallying the troops. And if you can’t tell... this boy absolutely loves his cookies. #MomLife #ParentingMoments #ChildhoodJoy #RealLifeParenting #FamilyFun
When your baby is born, someone will ask if you want them to have a routine heel prick. Say yes. ❤️ That tiny heel prick can screen for serious, rare conditions before a baby ever shows signs that something is wrong. September is Newborn Screening Awareness Month, and I’m forever grateful for the newborn screening that saved my girls’ lives. Both of my daughters were diagnosed with classic galactosemia because of that little test — allowing us to begin treatment before it was too late. Newborn screening can detect dozens of serious conditions, many of which are treatable when caught early. You may never expect your baby to have a rare disease. We certainly didn’t. But that tiny heel prick can change everything. Please say yes. Ask about your state’s newborn screening panel. And remember: a few drops of blood can save a life. 🤍 #NewbornScreening #NewbornScreeningAwarenessMonth #Galactosemia #RareDisease #RareDiseaseAwareness
When your baby is born, someone will ask if you want them to have a routine heel prick. Say yes. ❤️ That tiny heel prick can screen for serious, rare conditions before a baby ever shows signs that something is wrong. September is Newborn Screening Awareness Month, and I’m forever grateful for the newborn screening that saved my girls’ lives. Both of my daughters were diagnosed with classic galactosemia because of that little test — allowing us to begin treatment before it was too late. Newborn screening can detect dozens of serious conditions, many of which are treatable when caught early. You may never expect your baby to have a rare disease. We certainly didn’t. But that tiny heel prick can change everything. Please say yes. Ask about your state’s newborn screening panel. And remember: a few drops of blood can save a life. 🤍 #NewbornScreening #NewbornScreeningAwarenessMonth #Galactosemia #RareDisease #RareDiseaseAwareness
Google just mapped the 98% of your DNA doctors couldn’t read Doctors could only read about 2% of your DNA. The rest got written off as junk — turns out it’s the control panel telling your genes when to switch on and off. Google DeepMind built Alpha Genome Atlas: it scored all 9 billion possible one-letter DNA changes and turned it into a free tool. No coding needed. It’s already pointed to the exact spot causing a rare disease that stumped doctors for years — and found new links tied to body weight the old methods missed. Most of what makes you sick, healthy, or prone to gaining weight was hiding in DNA nobody could read. Now there’s a free tool that reads it. #dna #genomics #deepmind #alphagenome #ai
Google just mapped the 98% of your DNA doctors couldn’t read Doctors could only read about 2% of your DNA. The rest got written off as junk — turns out it’s the control panel telling your genes when to switch on and off. Google DeepMind built Alpha Genome Atlas: it scored all 9 billion possible one-letter DNA changes and turned it into a free tool. No coding needed. It’s already pointed to the exact spot causing a rare disease that stumped doctors for years — and found new links tied to body weight the old methods missed. Most of what makes you sick, healthy, or prone to gaining weight was hiding in DNA nobody could read. Now there’s a free tool that reads it. #dna #genomics #deepmind #alphagenome #ai
Turns out Schiaparelli isn’t a pasta shape or a rare disease. It’s a designer. Who knew!? This dress was supposed to be returned last year but I lost the receipt, so I never returned it… oops. I will never have an occasion to wear it so I thought, why not plate up some takeout in this super comfortable formal gown and channel @naraaziza Smith #satire #parody
Turns out Schiaparelli isn’t a pasta shape or a rare disease. It’s a designer. Who knew!? This dress was supposed to be returned last year but I lost the receipt, so I never returned it… oops. I will never have an occasion to wear it so I thought, why not plate up some takeout in this super comfortable formal gown and channel @naraaziza Smith #satire #parody
If you’re an exhausted Physical Therapist, this is for you.⁠ ⁠ It’s crazy that the most caring PT’s are also the ones too exhausted to train or take care of themselves.⁠ ⁠ The decision and compassion fatigue leaves nothing in the tank when you leave the clinic.⁠ ⁠ That’s a problem.⁠ ⁠ If you want to take care of your patients and family for years to come, you can’t always be last on the priority list. You have to start prioritizing your health and fitness.⁠ ⁠ That’s why I built The Healthy Clinician program.⁠ ⁠ It’s a full health, habit and lifestyle change program designed for the lives of busy Physical Therapists, chiropractors and strength coaches.⁠ ⁠ It gives you the support & accountability you need to be consistent when life is crazy.⁠ ⁠ We’ve helped 250+ coaches and clinicians get strong, stop hurting and feel confident again.⁠ ⁠ Good coaching changed my life as a Physical Therapist. Then it helped save it from a rare disease and bring me back to my family ⁠ ⁠ Let me pay it forward and help you now.⁠ ⁠ Comment “PT” and I’ll reach out to share how it works and if it’s a fit for you too
If you’re an exhausted Physical Therapist, this is for you.⁠ ⁠ It’s crazy that the most caring PT’s are also the ones too exhausted to train or take care of themselves.⁠ ⁠ The decision and compassion fatigue leaves nothing in the tank when you leave the clinic.⁠ ⁠ That’s a problem.⁠ ⁠ If you want to take care of your patients and family for years to come, you can’t always be last on the priority list. You have to start prioritizing your health and fitness.⁠ ⁠ That’s why I built The Healthy Clinician program.⁠ ⁠ It’s a full health, habit and lifestyle change program designed for the lives of busy Physical Therapists, chiropractors and strength coaches.⁠ ⁠ It gives you the support & accountability you need to be consistent when life is crazy.⁠ ⁠ We’ve helped 250+ coaches and clinicians get strong, stop hurting and feel confident again.⁠ ⁠ Good coaching changed my life as a Physical Therapist. Then it helped save it from a rare disease and bring me back to my family ⁠ ⁠ Let me pay it forward and help you now.⁠ ⁠ Comment “PT” and I’ll reach out to share how it works and if it’s a fit for you too
Between all the diagnoses (it's never just one, autism, TCF20, a rare disease most people have never even heard of, and everything that comes with both), the OT, the PT, the specialists, the IEP meetings, the dentist visits, the insurance battles, and the meltdowns, Things that used to seem important, don't. And your needs come last, every time. You set your own health, body, fitness to the side, because while keeping up with all the appointments, who has time for the gym? But from one autism mom to another, you can't keep pouring from an empty tank. Taking care of yourself isn't selfish, it's necessary in order for you to keep showing up as your best self for him. If you're a mom in perimenopause raising a special needs child and you're finally ready to take care of yourself too, DM me SPECIAL MOM.
Between all the diagnoses (it's never just one, autism, TCF20, a rare disease most people have never even heard of, and everything that comes with both), the OT, the PT, the specialists, the IEP meetings, the dentist visits, the insurance battles, and the meltdowns, Things that used to seem important, don't. And your needs come last, every time. You set your own health, body, fitness to the side, because while keeping up with all the appointments, who has time for the gym? But from one autism mom to another, you can't keep pouring from an empty tank. Taking care of yourself isn't selfish, it's necessary in order for you to keep showing up as your best self for him. If you're a mom in perimenopause raising a special needs child and you're finally ready to take care of yourself too, DM me SPECIAL MOM.
This is a conversation we as physicians need to be having with each other: respecting and learning from patient experience should be considered a valuable part of helping to take care of patients, especially with chronic or rare disease. Share a time when you had to speak up and advocate for yourself with a physician #chronicillness #ehlersdanlos #heds #raredisease #takeawaymd
This is a conversation we as physicians need to be having with each other: respecting and learning from patient experience should be considered a valuable part of helping to take care of patients, especially with chronic or rare disease. Share a time when you had to speak up and advocate for yourself with a physician #chronicillness #ehlersdanlos #heds #raredisease #takeawaymd
Breakthrough research from a Melbourne scientist found eating broccoli could help treat symptoms of Friedreich’s Ataxia (FRDA), a rare disease that gradually damages the nervous system, causing the loss of speech and movement. #broccoli #nervoussytem #disease #vegetable #research
Breakthrough research from a Melbourne scientist found eating broccoli could help treat symptoms of Friedreich’s Ataxia (FRDA), a rare disease that gradually damages the nervous system, causing the loss of speech and movement. #broccoli #nervoussytem #disease #vegetable #research
It 3am. Your kid has been sick for days. It doesn’t seem to be getting better, and google has convinced you that it’s either nothing or some rare disease. I find it incredible that at no point in the journey to parenthood, there’s a part where you learn about common childhood illnesses, how to manage at home and when you need to be seen by a provider! That’s why I took over a decade of managing kids professionally (and 7 years of applying it at home) and created a guide for parents to use at home. Cuz the best feeling is being confident in managing the never ending illnesses. Comment GUIDE and I’ll send it over
It 3am. Your kid has been sick for days. It doesn’t seem to be getting better, and google has convinced you that it’s either nothing or some rare disease. I find it incredible that at no point in the journey to parenthood, there’s a part where you learn about common childhood illnesses, how to manage at home and when you need to be seen by a provider! That’s why I took over a decade of managing kids professionally (and 7 years of applying it at home) and created a guide for parents to use at home. Cuz the best feeling is being confident in managing the never ending illnesses. Comment GUIDE and I’ll send it over
When 10-month-old Noa Greenwood was diagnosed with a rare genetic disease, her parents, Lee and Lori were confronted with an idea of a future they'd never prepared for; the likelihood that their daughter would not progress beyond the abilities of a six-month-old and may not live past her 10th birthday. Noa is one of more than 30 million Americans living with a rare disease. Fewer than 5% of these diseases have an FDA-approved treatment, leaving the people behind these numbers waiting for a treatment. Many rare diseases are comprised of relatively small patient populations, often considered too small a market for traditional pharma to fund; even when medical researchers had found potential therapies. BridgeBio is built on a new model, finding therapies for rare genetic diseases using clearer biology, faster learning, and smarter financing. Noa's story is what that looks like in a single life and a reason for hope for the millions of families still waiting for answers.
When 10-month-old Noa Greenwood was diagnosed with a rare genetic disease, her parents, Lee and Lori were confronted with an idea of a future they'd never prepared for; the likelihood that their daughter would not progress beyond the abilities of a six-month-old and may not live past her 10th birthday. Noa is one of more than 30 million Americans living with a rare disease. Fewer than 5% of these diseases have an FDA-approved treatment, leaving the people behind these numbers waiting for a treatment. Many rare diseases are comprised of relatively small patient populations, often considered too small a market for traditional pharma to fund; even when medical researchers had found potential therapies. BridgeBio is built on a new model, finding therapies for rare genetic diseases using clearer biology, faster learning, and smarter financing. Noa's story is what that looks like in a single life and a reason for hope for the millions of families still waiting for answers.
My content has been a little heavier lately, focused on rare disease life, since so much has been going on with the girls this summer... so I figured it was time to lighten the mood with my little Cookie Monster. 🍪🤎 If you’re new here... meet my personal Cookie Monster. This level of excitement can only mean one thing... Cookies!!!! 🍪 Danny, as always, rallying the troops. And if you can’t tell... this boy absolutely loves his cookies. #MomLife #ParentingMoments #ChildhoodJoy #RealLifeParenting #FamilyFun
My content has been a little heavier lately, focused on rare disease life, since so much has been going on with the girls this summer... so I figured it was time to lighten the mood with my little Cookie Monster. 🍪🤎 If you’re new here... meet my personal Cookie Monster. This level of excitement can only mean one thing... Cookies!!!! 🍪 Danny, as always, rallying the troops. And if you can’t tell... this boy absolutely loves his cookies. #MomLife #ParentingMoments #ChildhoodJoy #RealLifeParenting #FamilyFun
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