from Avery’s Fight https://bit.ly/3oS4XAf
Happy International Dance Day! #internationaldanceday
Tag: Facebook
New at Little Bit
from Avery’s Fight https://bit.ly/43Xcei9
For the past several years I have been working with FH Europe – The European FH Patient Network as an HoFH Ambassador. I’ve had the opportunity to share Avery’s story multiple times on an international level, take part in many webinars and Zoom meetings with other HoFH Ambassadors, consult with pharmaceutical companies on marketing initiatives and educational pieces, etc. As you know, I love sharing our story and raising awareness of HoFH and I’m so thankful to FH Europe for providing me these opportunities, especially because I’m a U.S. citizen! If you haven’t yet, go like them on social media. They share a lot of great information and you can keep tabs on when I may be speaking next!
#averysfight #hofh #fheurope #HoFHambassador #heartdisease
#congenitalheartdefects #highcholesterol #heartattack #knowfh
#fheuropeambassador
New at Little Bit
from Avery’s Fight https://bit.ly/43U461H
I’m so excited to share that I have been invited to speak at the World Heart Federation’s “World Heart Summit” in Geneva, Switzerland. In just under a month I will be speaking as part of their Pre-Summit Program at the Rare Diseases Forum. Avery will be joining me as well at the summit and is looking forward to sharing her perspective.
Thank you FH Europe for facilitating the opportunity for me to share on a global level. I am so honored to be speaking at such a prestigious event!
#averysfight #hofh #fheurope #HoFHambassador #heartdisease
#congenitalheartdefects #highcholesterol #heartattack #switzerland
#worldheartsummit
#worldheartfederation
New at Little Bit
from Avery’s Fight https://bit.ly/3ogN8KQ
A few months ago I was contacted by Leben Mit, a German company, who wanted to do a piece on Avery for their upcoming “Living with Rare Diseases” article. It was just published and I’m told should reach 10 million readers. We’re so grateful for the opportunity to keep raising awareness of #hofh! Here’s a link to the online article: https://bit.ly/3USlUqd
Avery is also featured on their website: https://bit.ly/3o9uvZ7 and on page 8 of the E-Paper: https://bit.ly/3UFKJFK
So, who knows German? 🤷🏼♀️
@lebenmit_magazin
#HoFH #averysfight #heartdisease
#raredisease #highcholesterol
#HoFHambassador
There are no easy answers. Everything decision we’ve made we have had to measure risk vs. benefit. It’s exhausting.
Why Pandemic Decision-Making Is Complicated When Your Child Has a Rare Disease
More info @ https://ift.tt/3hvalDt
Automated post from Avery’s Fight – https://ift.tt/1YdH55n
May 14, 2021 at 09:26AM
FH Europe – The European FH Patient Network’s webinar on FH and Women is now available to watch. I start speaking around 23:00. Unfortunately, I had technical issues that day so my presentation is not great or lengthy, but you still get an abbreviated version of our story. Please watch and share! I know there are millions of women out there who may have similar stories or learn from my mistakes. ❤️ #KnowFH #HoFH #AverysFight From FH Europe’s post: Our webinar recording is now available to watch in the original version and with captions in your local language. Learn more how #FamilialHypercholesterolemia impacts women. Very emotional and inspirational patient stories by Karolin Kastowsky-Priglinger (Austria) and @MichelleWatts @AverysFight (USA), complimenting medical expert presentations from the Netherlands and the UK. https://www.youtube.com/watch?v=ylweYNgFVB8 #FindFH #ManyFacesOneHeart #WomensHealth #womenshearthealth #CVD #Cholesterol #patientexperience #patientempowerment #healthliteracy Endorsed by European Atherosclerosis Society (EAS) & Congress (EAS) & Congress
Familial Hypercholesterolemia – an unfamiliar women’s issue
FH Europe is supporting International Women’s Day 2021. Each year International Women’s Day is celebrated to recognise the achievements of women while callin…
More info @ https://l.facebook.com/l.php?u=https%3A%2F%2Fwww.youtube.com%2Fwatch%3Fv%3DylweYNgFVB8&h=AT3b4kcsFf1pz5HQy97hjDWVE9H46_xSdf9r8tIR3hdTbqOeHoI9uElgG3SCH21PAjPoR2ykw8N-MqyKUkvGGaCdUaxAhQEG5XZb40MKD9umy-N6jY3IkrI8US-gMiNr&s=1
Automated post from Avery’s Fight – https://ift.tt/1YdH55n
April 26, 2021 at 01:37PM
FH Europe – The European FH Patient Network’s webinar on FH and Women is now available to watch. I start speaking around 23:00. Unfortunately, I had technical issues that day so my presentation is not great or lengthy, but you still get an abbreviated version of our story. Please watch and share! I know there are millions of women out there who may have similar stories or learn from my mistakes. ❤️ #KnowFH #HoFH #AverysFight From FH Europe’s post: Our webinar recording is now available to watch in the original version and with captions in your local language. Learn more how #FamilialHypercholesterolemia impacts women. Very emotional and inspirational patient stories by Karolin Kastowsky-Priglinger (Austria) and @MichelleWatts @AverysFight (USA), complimenting medical expert presentations from the Netherlands and the UK. https://www.youtube.com/watch?v=ylweYNgFVB8 #FindFH #ManyFacesOneHeart #WomensHealth #womenshearthealth #CVD #Cholesterol #patientexperience #patientempowerment #healthliteracy Endorsed by European Atherosclerosis Society (EAS) & Congress (EAS) & Congress
Familial Hypercholesterolemia – an unfamiliar women’s issue
FH Europe is supporting International Women’s Day 2021. Each year International Women’s Day is celebrated to recognise the achievements of women while callin…
More info @ https://l.facebook.com/l.php?u=https%3A%2F%2Fwww.youtube.com%2Fwatch%3Fv%3DylweYNgFVB8&h=AT34mh2WS7PkI4qY8BXhSGGBnb4KuAnSeQF5_LhHZOJzffM9wUifs0i8smsSRL9O3-LI4jW-K2QWHHU8ZNhhEnSQO_sasM3g0rMXpi4q78r0gXyRHCwLqlFNMzWElJLc&s=1
Automated post from Avery’s Fight – https://ift.tt/1YdH55n
April 26, 2021 at 07:18AM
❤️
Helping Children Cope with Hospitalizations
More info @ https://ift.tt/3rGxsgu
Automated post from Avery’s Fight – https://ift.tt/1YdH55n
March 11, 2021 at 03:03PM
Throughout the month of February, rare disease patients, caregivers, family members and friends, shared what it’s really like being part of the rare disease community using the hashtag #RareDiseaseTruth (search Twitter) https://ift.tt/3e5fj8t
13 ‘Rare Disease Truths’ that will change your perspective
Throughout the month of February, rare disease patients, caregivers, family members and friends, have been sharing what it’s really like being part of the rare disease community using the hashtag #RareDiseaseTruth.
More info @ https://ift.tt/3uDtV4y
Automated post from Avery’s Fight – https://ift.tt/1YdH55n
March 01, 2021 at 06:08PM
Here’s a little video Mind+Matter US put together of a day of Avery’s life. Enjoy! https://ift.tt/3r2xLCg
mindplusmatter_us on Instagram: Meet Avery of @averysfight, the bright young lady putting up the biggest fight against homozygous familial hypercholesterolemia, or HoFH.…
Black Box • Spring Time
More info @ https://ift.tt/3b2p59n
Automated post from Avery’s Fight – https://ift.tt/1YdH55n
February 28, 2021 at 04:20PM
Discouraging to read this morning that this drug is going to be priced at an average of $450,000/year. Gulp. Talk about a treatment barrier. 💔 https://ift.tt/2Niz7tE
Regeneron antibody earns nod for rare cholesterol disorder — but it ain’t cheap
Regeneron has a new approved drug to add to its stable of monoclonal antibodies. The FDA gave the thumbs-up to the biotech’s evinacumab, to be called Evkeeza, as a supplement to other LDL-lowering treatments for the rare genetic disorder homozygous familial hypercholesterolemia. Evkeeza has been i…
More info @ https://ift.tt/3jJk7kH
Automated post from Avery’s Fight – https://ift.tt/1YdH55n
February 12, 2021 at 08:07AM
Sharing an article published by Avery’s Boston cardiologist, Avery’s previous cardiologist at AIDHC and several other FH friends. We’re doing too little too late. (Originally published in The Journal of Pediatrics). #KnowFH
Children with Heterozygous Familial Hypercholesterolemia in the United States: Data from the Cascade Screening for Awareness and Detection-FH Registry
To describe enrollment characteristics of youth in the Cascade Screening for Awareness and Detection of FH Registry.This is a cross-sectional analysis…
More info @ https://ift.tt/3kH8N7u
Automated post from Avery’s Fight – https://ift.tt/1YdH55n
November 18, 2020 at 03:57PM
Sharing a piece CNN did featuring friends of ours in the #raredisease community. The ADA is so important for children like Rob and Avery.💙
Opinion: The confirmation of Amy Coney Barrett is a threat to families like mine
Jeneva Stone, a mom of a disabled son, writes about what life was like for her family before the Affordable Care Act. She details how her family surfed the edge of financial ruin, ineligible in Maryland for a Medicaid waiver to assist with her son’s medical care.
More info @ https://ift.tt/3m6pI4g
Automated post from Avery’s Fight – https://ift.tt/1YdH55n
October 20, 2020 at 12:33PM
Thank you to everyone who has reached out to us about helping with Avery’s next open-heart surgery. Please see and share link below! ❤️
Avery’s Fight
Hello! If you’ve been following us for awhile, you know our now 12-year-old daughter, Avery, had a scheduled open-heart surgery this past January to correct supravalvular aortic stenosis in addition to several other issues. She initially was doing well after surgery but then started to decline. S…
More info @ https://ift.tt/3lW4p5g
Automated post from Avery’s Fight – https://ift.tt/1YdH55n
October 16, 2020 at 10:29AM
The Watts Family Story – Ronald McDonald House of Delaware
When Avery Watts was 11 years old, she had a heart attack. At age 12, she has already had two open-heart surgeries. She and her family are preparing for
More info @ https://ift.tt/352BUvY
Automated post from Avery’s Fight – https://ift.tt/1YdH55n
October 14, 2020 at 05:47PM
Avery's Fight 