Why Pandemic Decision-Making Is Complicated When Your Child Has a Rare Disease
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May 14, 2021 at 09:26AM
Category: Automated
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…
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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
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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
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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…
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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…
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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.
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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…
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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
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October 14, 2020 at 05:47PM
Here’s a piece the Ronald McDonald House of Delaware just published on our family. Take a look! Thank you RMHOUSE of Delaware for sharing our story. (Please share!) ❤️
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/3j0KFfc
Automated post from Avery’s Fight – https://ift.tt/1YdH55n
October 14, 2020 at 05:35PM
Hello Avery’s Fight Family. Today I want to share a fellow HoFH warriors story. Natalia Hester is a friend we met through the FH Foundation and one of the sweetest people I know. She has really been through a lot in her life with regard to HoFH treatments and finally on July 7th ended up having a liver transplant as she was out of options. Although insurance paid for much of her surgery, there are still many out-of-pocket costs like the anti-rejection medications, etc that she’ll need to take the rest of her life. She also needs many prayers to recover quickly and completely. If you can, please help by donating to her fundraiser and share this post with your friends and/or groups you belong to. ❤️ #HoFH #raredisease #livertransplant #homozygousfamilialhypercholesterolemia
Transplant Today 4 Talias Tomorrow organized by Natalia Hester
Hi! For everyone who has been following my story or for anyone who is just now read… Natalia Hester needs your support for Transplant Today 4 Talias Tomorrow
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Automated post from Avery’s Fight – https://ift.tt/1YdH55n
July 16, 2020 at 10:34AM
This.
I Get It. You Want To Restart Your Life. But Doing So Could Kill My Child.
Her right to live outweighs your right to watch a movie without a mask.
More info @ http://huffp.st/M14FPRb
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June 22, 2020 at 12:17PM
Great to see two of Avery’s three hospitals in the top five children’s hospitals again! Congrats Boston Children’s Hospital (#1) and Children’s Hospital of Philadelphia (#2)! ❤️
The Best Children’s Hospitals By Speciality
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Automated post from Avery’s Fight – https://ift.tt/1YdH55n
June 16, 2020 at 01:59PM
Avery's Fight 