Avery’s Tribute for Rare Disease Awareness

Over the past several months, Avery worked really hard making this piece to acknowledge, encourage and pay tribute to all individuals with Rare Diseases. She learned a medium of dance she’s never done, or really even seen before as well as many skills that were totally new to her. For the purpose of editing the video together, some of those new skills didn’t end up in the final video. We’re so proud of all the work and heart she put into this piece. A special thank you to Sonja Davis at Urbana Dance Studio and Andrew Mangum of Andrew Mangum Photography as well as the Maryland Theatre.

New at Little Bit

from Avery’s Fight https://bit.ly/3oS4XAf
Happy International Dance Day! #internationaldanceday

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! #hofh #fheurope #HoFHambassador #heartdisease #congenitalheartdefects #highcholesterol #heartattack #knowfh #fheuropeambassador

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

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! #hofh #fheurope #HoFHambassador #heartdisease #congenitalheartdefects #highcholesterol #heartattack #switzerland #worldheartsummit #worldheartfederation

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

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 #heartdisease #raredisease #highcholesterol #HoFHambassador

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