Rare Disease Day – Avery Talks About HoFH
Why does Avery care about Rare Disease Day? She is 7 years old and living with Homozygous FH, a rare form of familial hypercholesterolemia.
More info @ https://www.youtube.com/attribution_link?a=3AxhRbQPy7s&u=%2Fwatch%3Fv%3DOLNT0kDbq3w%26feature%3Dshare
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February 29, 2016 at 11:14AM
Month: February 2016
I highly recommend this short video about FH. Take a minute to watch it with your families. Thank you to The FH Foundation for putting out such a beautiful video! #AverysFight #RDD2016 #KnowFH
FH: A Story of Hope – EXTENDED
18 year old Hope goes on an enlightening musical journey to explore FH (familial hypercholesterolemia) and discovers that by taking control and sticking to a…
More info @ https://www.youtube.com/attribution_link?a=2AcONCnw2KQ&u=%2Fwatch%3Fv%3DQs2cQDof-vQ%26feature%3Dshare
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February 29, 2016 at 11:12AM
Want to know more about HoFH?
The FH Foundation
Today we recognize those living with homozygous familial hypercholesterolemia (HoFH) and those we have lost much too soon to this severe disorder. Learn more about HoFH: http://ift.tt/21DRaa8
More info @ http://ift.tt/21DRaa8
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February 29, 2016 at 11:00AM
7 Questions to Ask Yourself If You Think Rare Disease Day Doesn’t Apply to You
“7. Do you have 10 friends?”
More info @ http://ift.tt/1LOOfSK
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February 28, 2016 at 10:21PM
Raise your hand!
Thank You for Raising Your Hand! | Rare Disease Day USA
By raising your hand, you have just shown your support for the 30 million Americans who are affected by rare diseases. Thanks to you, Lundbeck has made a $1 donation to support rare disease research (up to a maximum donation of $10,000 for the campaign). The money raised will be contributed to a gen…
More info @ http://ift.tt/1SbgyBz
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February 28, 2016 at 09:41PM
Michelle
Wahoo! Just heard Avery’s been granted a wish!!!
More info @ http://ift.tt/21hdl9f
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February 24, 2016 at 03:38PM
Here’s a story on our friend Christian Jacobs. Like Avery, Christian also has HoFH and does Apheresis. So nice to hear he now can have his treatments close to home! #KnowFH #HoFH #FHAdvocate #apheresis
OSU To Offer Specialized Treatment For Severe Cholesterol
The Ohio State University Wexner Medical Center now offers LDL Apheresis – a treatement for high cholesterol that removes bad cholesterol from the bloodstream.
More info @ https://shar.es/1C31cf
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February 23, 2016 at 08:26PM
Anyone joining the webinar? We’re about to get started. #KnowFH
Registration
By clicking this button, you submit your information to the webinar organizer, who will use it to communicate with you regarding this event and their other services.
More info @ http://ift.tt/1RjvJ9e
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February 23, 2016 at 06:58PM
A video of another child a few years older than Avery with HoFH. #AverysFight #HoFH
Cam Tipping – One in a Million Teenager
Cam Tipping is living with a rare cholesterol disorder called homozygous familial hypercholesterolemia. Research, the use of cholesterol-lowering medications…
More info @ https://youtu.be/Tk0lE0AJ5gY
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February 22, 2016 at 09:43PM
Alone we are rare. Together we are strong. #NORD #KnowFH #HoFH #AverysFight
Rare Disease Day 2015 Highlights
Rare Disease Day 2015 was our most impactful yet! Take a look at our highlight video & visit http://ift.tt/1QuKVgI to learn how to keep the mo…
More info @ https://youtu.be/r0vpEwcM8rM
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February 22, 2016 at 09:30PM
Want to learn more about FH? Register for this free webinar with Dr. Michael Shapiro and founder of The FH Foundation, Katherine Wilemon tomorrow evening. #KnowFH
Registration
By clicking this button, you submit your information to the webinar organizer, who will use it to communicate with you regarding this event and their other services.
More info @ http://ift.tt/1RjvJ9e
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February 22, 2016 at 06:16PM
The FH Foundation
According to the results of a nationwide survey conducted by the Women’s Heart Alliance (WHA) 45% of women are not aware that heart disease is the most common killer of women in the United States. In fact, 7 out of 10 women almost never discuss heart health with their physician. Read more here:
http://ift.tt/1QVLkt2
More info @ http://ift.tt/1QVLkt2
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February 22, 2016 at 12:02PM
PLEASE take a minute to help out the FH Foundation. Click on the photo below, then click SUPPORT. You can add your support for Facebook as well as Twitter and Tumbler if you use those. It’s free and just takes a minute to do.
Stop Family Heart Disease!
I just supported Stop Family Heart Disease! on @ThunderclapIt // @TheFHFoundation
More info @ http://ift.tt/1TvHv3K
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February 19, 2016 at 08:42PM
A recently published paper on HoFH. Something to think about as you go about your day. I have high expectations of people. I think everyone has the ability to live each day to the fullest and to be kind to everyone they meet. A smile can change someone’s day. Perspective is everything. Live like a 7-year-old. #KnowFH #AverysFight #kindnessmatters #thestruggleisreal #perspective
Homozygous familial hypercholesterolemia in childhood: Genotype-phenotype description,…
To view the full text, please login as a subscribed user or purchase a subscription. Click here to view the full text on ScienceDirect.
More info @ http://bit.ly/1K4xXtO
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February 17, 2016 at 07:24PM
GREAT NEWS — we’ve sold the minimum required, so everyone’s shirts will be printed!! We’re in the final hours of our campaign. If you’ve been waiting to place your order, don’t wait any longer. This is the last chance you’ll have to get your Avery’s Fight shirt in time for Rare Disease Day. It’s so exciting to see all the people who are purchasing shirts to support our little girl! Thank you everyone! Please continue to share with your friends!
Click here to support Avery’s Fight Apparel Fundraiser organized by Michelle Watts
Please help us raise awareness of HoFH by purchasing a shirt or hoodie and wearing it on February 29th for Rare Disease Day 2016.
More info @ http://ift.tt/1QL7xfK
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February 09, 2016 at 03:15PM
Avery's Fight 