Keeping our community going strong for 10 years
Whoa! Mind blowing!
While I was not there at the exact inception of the FH Foundation, I have been along for the ride for most of the time and think it a great time reflect on how far we have come as an organization and as a community, celebrate some of our achievements and suggest WHY we have been able to do it and WHY I am optimistic it will continue.
It is our attention to our mission that has allowed our success. What started as a hope and a dream from Katherine has, through effort, energy, and intention grown and matured into a model organization. And while the FH Foundation has never been the largest organization, we have remained nimble, packing a punch well above our weight. It is this nimbleness that has allowed us to innovate across many spheres from big data and machine learning to pivoting quickly in the times of COVID to support our community virtually.
Even the largest pandemic in the last 100 years has not derailed us on our mission, instead reenforcing the idea that preventive care is critically important! I am personally most proud of our tangible accomplishments that demonstrate our commitment (Figure 2) especially our efforts to increase awareness of FH, massively increase the diagnosis of FH (including through an FH specific ICD-10 code) and advocate for increased funding for FH research and public health efforts.
However, equally important in my own personal journey with the FH Foundation is realizing that what I find most important may or may not be the most important thing for different members of our community. What is “good for the goose” may not actually be what is “good for the gander!"
This idea, that people have inherently different needs, has been popularized in a book by Gary Chapman called The 5 Love Languages with the central thesis that different people respond and need different ways of communicating love. Because the FHF has a sense of love for our community and because this is, after all, blog centered on our 10th anniversary with our community, I wanted to draw a parallel and showcase that one of the real keys to the success of the FHF has been that we are able to communicate effectively with all members of our broader community, bridge gaps and effect change. This is a testament to the team at the FHF and their skills. So with due apologies to the author, I wanted to show some examples of how the FHF uses various “love languages” to speak to our community.
- Race for FH and Lp(a) to raise critical funds
- FH Awareness Day, internationally recognized with millions touched
- Creation of an Specialist Map to guide affected individuals to care
- Webinars and Videos for patients and providers accessed now over thousands of times
- Increase access to Genetic Testing (PAGENT, HoFH Genetic Testing)
- Multiple papers from the FH CASCADE Registry including papers on pediatrics, longitudinal care, treatment gaps for women and non-Whites in the US
- Creation of and lobbying for an FH specific ICD-10 Code
- Other Major Publications
- Genetic Testing Statement
- COVID-19 study
- #KnowFH hashtag to raise awareness on Twitter
- Pioneer Awards (acknowledging efforts towards FH research)
- Tools and Resources for FH and high Lp(a)
- What to Expect – series
- FOCUS Initiative describing how under-treated FH is in many cases
- FH Diagnosis App to help providers accurately diagnose FH
- COVID-19 resources
- FIND FH program to identify previously undiagnosed FH individuals
- Lobbying for new therapies for HoFH and HeFH
It is precisely because we speak in many languages of love with our community that we have remained strong and vital and that love is reciprocated (Table 2 of quotes).
I feel beyond fortunate to have found the Familial Hypercholesterolemia Foundation. The outreach team listened carefully to my concerns, answered all of my questions, and gave me a level of support that I have never felt in dealing with other past major medical issues. Although this journey has just begun for my family, I already feel like I have incredibly knowledgeable people on my team. How amazing to have this resource available!
– Jennifer M.
Shortly after learning the correct name for my condition, I did what anyone would do… I Googled it! This was how I connected with the FH Foundation and found the most amazing group of people. I was grateful to feel connected to a community of people who shared my fears, questions, and concerns. I was no longer alone.
The FH Foundation posted that they were looking for volunteer Advocates for Awareness and the training date was on my dad’s birthday. I think it is safe to say, the stars were aligned at this point. I signed up for the training and met my second family who changed my world.
Shortly after the surgery I started to search for answers myself. I finally found what I had been searching for. It wasn’t a miracle cure and it sure wasn’t a doctor who knew what the heck was wrong. I found my second family - I found the FH Foundation. Through my relentless searching on every platform, I found hope. I found a group of people who showed me exactly where I needed to be, they even gave me a name for my condition, “Familial Hypercholesterolemia.”
My wife and kids, my whole family and my friends are my driving force to get up each day and do what needs to be done to live a full life. The FH Foundation is the massive army and the ammunition that I needed to fight FH. They give me what my dad and other Wilson men didn’t have – the knowledge and resources that could have saved them. Through the FH Foundation I have had access to genetic testing and a wealth of knowledge that I never would have imagined. What I really gained was how important advocacy is. Not only do I now have the ability and wisdom to stand up for myself and ask for the treatment I need, I have an entire foundation that has my back. Not only can I help myself now, they’ve trained me to advocate so I can help others too.
Two years ago, I had genetic testing through participation in the FH Foundation’s PAGENT study (Patient Acceptance of Genetic Testing)3 and was surprised that “no pathogenic or likely pathogenic mutations” for FH were identified. Understanding the impact of FH on my family and myself, this didn’t shake my conviction that I was on the right track with both the clinical diagnosis and treatment. As it turns out, a variant of unknown significance identified in my results is increasingly suspected to be pathogenic. Yet I worry that some of those who are recently diagnosed and might understandably prefer to hear they don’t, in fact, have FH, would be confused enough by the ambiguity in a result like mine to abandon life-preserving treatment. I’m again reminded of how important it is to communicate an FH diagnosis in a way that motivates someone like me to take appropriate action.
Without FH Foundation’s resources on the latest research with regard to Covid-19, I’d never know that should I contract it I’ll be in greater danger than the average person. The printed letter from the FH Foundation to ER doctors to guide their care for me should I need it is displayed for easy access on our family’s refrigerator. This information could save my life and I’m so grateful to have it.
Having had Covid twice in the past year as well as multiple heart attacks and bypass surgery, I continuously looked to the FH Foundation website and social media for the latest research and data for Covid-19. I found it to be very crucial knowledge when dealing with FH during the pandemic.
I have been told that in the modern era a diamond is the symbol for the 10th anniversary and especially in this season of giving hope that many of you will help us continue on our mission and remain strong for the next 10 years and beyond!
Joshua W. Knowles, MD, PhD
Chief Research Advisor
The Family Heart Foundation