May the 4th is special! Not only because it is the official day of celebration for Star Wars fans around the world but, this year, it marks the launch of the first awareness day for Homozygous Familial Hypercholesterolaemia (HoFH).
HoFH is a rare and severe genetic disorder characterised by extremely high levels of LDL cholesterol from birth. It affects approximately 1 in 300,000 individuals worldwide. The excessive buildup of LDL cholesterol can lead to the early onset of heart health issues, coined with the term cardiovascular disease (CVD), including heart attacks and strokes, even death, as early as the first decade of life. Due to its rarity, the situation of people with HoFH is often overlooked, which does not do justice to the gravity of the condition and the challenges patients with HoFH and their families face. Nor is the importance of early diagnosis and immediate treatment of people with HoFH widely understood amongst the medical and lay public.
With the theme One Galaxy, One Heart: UNITE FOR HoFH AWARENESS the community hopes to evoke the spirit of unity, solidarity, and collective action in raising awareness about HoFH. The occasion has already activated global stakeholders and supporters operating in the space of cardiovascular health, inherited lipids, patient advocacy and more. Motivated by a shared desire to shine a spotlight on what it means to live with HoFH and to prevent the preventable, the FH Europe Foundation and the international HoFH Patient Ambassadors and their families, invited to join forces with the World Heart Federation, the European Atherosclerosis Society, and the International Atherosclerosis Society, Global Heart Hub, the Iraqi Lipid Clinics Network, the Family Heart Foundation and many more organisations and individuals in the campaign.
“The patients’ community chose May the 4th given its association with the Star Wars phrase ‘May the Force be with you.’ Just as the characters in Star Wars bond together to overcome challenges, people and families affected by HoFH can find strength and support in their community.” said Elsie Evans, FH Europe Foundation's Education Project Manager and an HoFH Ambassador.
The campaign will raise awareness of the need to urgently improve early detection with increased systematic childhood screening programs, ensure correct and timely diagnosis combined with equitable access to treatment and genetic counselling for those affected with this rare and severe disorder.
Prof. Albert Wiegman, from the Netherlands, the world expert in treating children with HeFH and HoFH, is excited about the new era “Effective treatments to lower the extremely high blood cholesterol to normal levels are being developed or improved and approved for children. But …while those, who are in the greatest need of these treatments are being detected in one country, in another country they are hardly diagnosed or far too late. Unthinkable but true. There is urgency to find them early and to treat them well. It will add decades of healthy life years. Creating awareness is vital!”
According to Chyrel Lichaa, HoFH Ambassador from Lebanon and the Project Manager for the campaign, “As HoFH patients, we should not have to let healthcare uncertainties dictate how we lead our lives or stand in the way of our happiness. True care extends beyond medication; it embraces our emotional and mental well-being. We deserve better than to be at the mercy of treatment availabilities. Unfortunately, some of us face the challenges and limitations of having HoFH daily.”
"We are thrilled to announce the launch of HoFH Awareness Day," said Magdalena Daccord, CEO, FH Europe Foundation. “By uniting, we gain more visibility and a stronger voice. We can inform the public, medical community, and policymakers on how to diagnose early and support better people with HoFH and their families. We also want to draw attention to the fact that while HoFH can be diagnosed and successfully managed, due to the complexity of care, low level of awareness about FH in general and other factors including cost of treatment, there is huge variation in detection and the level of care around the world.”
In effort to raise awareness and to unite the global HoFH community, we are delighted to announce a dedicated logo competition. The idea behind it is simple. An open invitation to the public to create a logo for the community and the day will stimulate a participatory element of the campaign. The possibility to participate will be open till September 24th, which marks the FH Awareness Day, building a bridge between the two important dates.
Let's dive deeper into the heart of the campaign, the voices of international Ambassadors and advocates as they share their powerful messages on why HoFH Awareness Day matters. We thank the community from around the world for being part of this galactic initiative! As the messages keep pouring from all corners of the galaxy, we wish to express heartfelt thanks to patients, families, friends, doctors, nurses, pharmacists and many many more supporters whether from Europe, South Africa, Tanzania, Ethiopia, to Lebanon, Syria, Iraq, Afghanistan, Pakistan, as far as Australia, the US & many more for sharing their video messages. We keep posting them on our YouTube channel. Today, we invite you to meet Marc, Michelle, Prof. Wiegman, and Elsie.
Marc Salloum: 13 Year old boy living with HoFH from Lebanon
Marc decided to take part to tell his story. As a consequence of HoFH, Marc has visible cholesterol deposits under his skin. Unfortunately, children and adults around him are unaware of this rare disorder. They often make hurtful comments, which upset Marc. Here is why he thinks a dedicated HoFH Awareness Day is needed.
Michelle Watts: an Ambassador for HoFH and HeFH from the USA
She is also a caregiver for her daughter with HoFH. Michelle over the years has been involved in awareness raising about rare and severe lipid disorder. Here is why she thinks a dedicated HoFH Awareness Day is needed.
Prof. Albert Wiegman: Paediatric cardiologist from the Netherlands
Prof. Wiegman has been treating families with FH (HeFH and HoFH) for over 3 decades. Here is why he thinks a dedicated HoFH Awareness Day is needed.
Elsie Evans: an Ambassador for HoFH from South Africa
Elsie is an Education Manager with FH Europe Foundation and HoFH Ambassador, she originally comes from South Africa and she currently lives in the UK. Throughout the past few years, she's been advocating for stronger support for families affected by HoFH and promoting research about HoFH in adults. Here is why she thinks a dedicated HoFH Awareness Day is needed.
Here's how you can join the rebellion and make HoFH Awareness Day an event to remember:
For more information on how to support this campaign and to get involved here or follow us on social media using the hashtag #Unite4HoFH
HoFH Awareness Day 2024 activities are supported by funding from Arrowhead Pharmaceuticals, Chiesi, Regeneron, and Ultragenyx.
For media inquiries, please contact: gc@fheurope.org.
Remember, the Force is strong when we stand together. Let's use our collective power to shine a light on HoFH and make a positive impact on those affected by this condition.
HoFH Awareness Day campaign kicks off with plenty of surprises in store. Stay tuned for more updates. Together, we'll triumph over the dark side of HoFH!
Are you ready to make a difference and showcase your creative talents? We, the HoFH community under the umbrella of FH Europe Foundation, call on all artists, designers, and creative enthusiasts from all walks of life to participate in our exciting logo competition for HoFH Awareness Day!
Whether you're a seasoned designer or simply passionate about raising awareness or drawing and telling a good story with your art, this is your chance to be part of something special. Read on to learn how you can save lives and unite a global community of individuals and their relatives living with a rare disease.
What is HoFH? HoFH is a rare genetic condition that affects individuals from all backgrounds and walks of life. It's characterized by dangerously high levels of LDL cholesterol, leading to an increased risk of premature cardiovascular disease. Despite its rarity, HoFH can have a profound impact on individuals and families, making awareness and support crucial. HoFH is a genetic condition, when a child inherits a copy of the same FH-causing gene from both parents. Although it is very severe and rare, it can be treater effectively. Yet, awareness, diagnosis and equitable access to medication is a serious issue leaving many at a risk of heart attacks and even death very early in childhood.
Why a Logo Competition? Why engaging the Public? We believe that raising awareness starts with a powerful symbol that resonates with people from all walks of life. That's why we're inviting YOU to design the official logo for HoFH Awareness Day! Your design will serve as a beacon of hope, unity, and support for those affected by HoFH, while also raising awareness in the wider community and helping prevent the preventable.
One Galaxy, One Heart: Unite for HoFH Awareness!
Your design will become the official logo for HoFH Awareness Day, leaving a lasting impact on the global community.
For inspiration, hear the stories from some our ambassadors on our HoFH webpage
Chyrel Lichaa (Read bio)
HoFH Patient Ambassador
Lebanon
Prof. Albert Wiegman (Read bio)
Paediatrician
The Netherlands
Prof. Marina Cuchel (Read bio)
Researcher
USA
Mateusz Szwachta (Read bio)
EAS Communication & Community Manager
Sweeden
Sara Otter (Read bio)
FHEF Artistic Ambassador
UK
Marc Salloum (Read bio)
HoFH Patient Ambassador
Lebanon
Kristýna Čillíková (Read bio)
Vice Chair CAKO
Czech Republic
Don't miss your chance to be part of something meaningful and make a difference in the fight against a rare and severe cardiovascular disease. Join us in raising awareness, promoting unity, and empowering individuals and families affected by HoFH. Together, we can create a brighter future for all.
For more information and updates, visit www.fhef.org, follow #Unite4HoFH or contact us at chyrel@fheurope.org .
Get creative, get involved, and let's unite for HoFH awareness!
“Hi, I'm Marwa Sadeek. I'm 38, and I live in London, UK. I work as a medical interpreter and hold a degree in psychology. I have two beautiful girls, one is six years old, and the other is 12- years old. I am a very keen tennis player and I enjoy reading whenever I get the chance, as when you have younger children you tend to run around with their hobbies rather than your hobbies.
I was diagnosed with HoFH (homozygous familial hypercholesterolaemia) when I was three years old. My mother noticed that I had symptoms on my eyelids, yellowish deposits. They ran tests in Great Ormond Street and that's when they officially diagnosed me with HoFH.
Straight away we started with medication and when I turned 9, we started with plasma exchange, which is very similar to LDL-apheresis and to this day I have this treatment.
Living with HoFH has its challenges and at every stage in life, I found the challenges are very similar. As a start, when I was in school, some schools didn't understand that I had to attend at least one day a week at the hospital to have my treatment, and that could affect my schoolwork.
As an adult finding a job and explaining to them that I have a certain medical condition, which is very rare can be hard, as not a lot of people are aware of what it is. When you say you have high cholesterol, a lot of the population has high cholesterol, but obviously, with HoFH it's much more serious. I had some of the managers gave me a very difficult time regarding taking time off work to attend my treatment, especially as well during my pregnancy when I had to attend extra appointments to make sure that I was okay through the pregnancy. My employee was not very happy with that.
Other than problems at work and school, you must understand that when you meet a potential partner, things might get serious. You have to explain your diagnosis and what impact it could have on family life. For example, when I met my partner, I explained to him that in order for us to have children or the possibility of having children, he had to be tested if he has FH because I don't want my children to, have HoFH. I know they will have FH, but if he does have the gene too, it means they will have HoFH.
So, it impacts on your personal life, your professional life. And as well, sometimes with friendships, you have to explain, that I have limited places to go eat. I need to make sure that the restaurant we go to has reasonably low-fat options that I can eat. And the problem is with HoFH, you could look absolutely fine physically. It doesn't show any physical symptoms unless it's quite bad. So, a lot of people tell you, but you look healthy. You're fine, you're slim, you're young. And that's because there isn't any awareness.
There is not much awareness of HoFH. It's not a known condition. Even in terms of getting medical insurance, they don't look at you as an individual case. As soon as you mention you have HoFH, you either get refused or the premium is extremely high. In my case, I am not a cardiac patient. I have high cholesterol. However, I have no cardiac problems, but unfortunately, there is no option to say, yes, I am HoFH, but I don't have any risk of, my risk of cardiac problems is quite low because I was diagnosed at a very young age.
My hope for the future of HoFH is that there will be some sort of testing for babies and early diagnosis. I can't push it enough or say it enough, the earlier the diagnosis the better outcome for a future with fewer cardiac problems. I'm a living example, I've been very lucky to be treated in the right hospitals with the right doctors and I have an amazing mother who actually fought for me to get to the right places.
I'm a mother of two I was always told that I would never be a mom with my condition. I am a miracle in a way, I hate to say it but what happened to me is a few years ago if you read about our condition we were told we wouldn't live you know over the age of 30, 40 and now with the new medication that's coming out with the technology that's happening in the medical field, I can dare to dream that I'll have a face full of wrinkles and white hair and I'll hopefully one day see my grandchildren. So please join us on the 4th of May to raise awareness of HoFH.”
Let us know if this story how this story affected you. Are you suspecting HoFH in your family? If you need additional information, please contact Emma@fheurope.org.
Are you ready to unite for HoFH Awareness?
The launch of the first-ever HoFH Awareness Day on May the 4th is approaching with the speed of light and we've been working tirelessly to prepare for this important event. From educational resources to community outreach initiatives, we are committed to making HoFH Awareness Day a resounding success.
🌎 But we can't and don’t want to do it alone.
United with the World Heart Federation, the International Atherosclerosis Society, the European Atherosclerosis Society, the Family Heart Foundation and the Global Heart Hub, we now INVITE YOU to get ready to channel your inner Jedi and unite against the dark side of HoFH.
🌠 REGISTER and JOIN our Galaxy online meeting and find out more about what the first-ever HoFH Awareness Day is all about and how you can contribute, participate, get empowered or simply help us spread the word.
WHEN?
🚀 Here’s what awaits you in our campaign kick-off online meeting:
The meeting will be led by our super trio Emma Print, FHEF Community Engagement Manager, Chyrel Lichaa, HoFH Galactic Ambassador and Project Manager and Elsie Evans, FHEF Ambassador Programme Project Manager.
As you may know, HoFH (Homozygous Familial Hypercholesterolaemia) affects individuals from birth and significantly increases the risk of heart disease already early in life. Despite its severity and the urgency to act, HoFH remains largely underdiagnosed and misunderstood. Even more surprisingly as HoFH occurs in families affected with FH, a very common inherited high cholesterol disorder.
That's why it's crucial for us to come together to raise awareness and support those living with this condition. And for that reason, we have chosen a special day and a special slogan - Unite for HoFH Awareness: One Galaxy, One Heart!
HoFH Awareness Day 2024 launch activities are supported by grant funding from Arrowhead Pharmaceuticals, Chiesi and Ultragenyx.