WELCOME TO NEW BLF SITE
Welcome to the new and improved website of the Blue Lips Foundation. Thank you for visiting us! We have designed our new site to be provide user-friendly access to information about pulmonary hypertension and provide insight into who we are and why we do it.
BLF was started in 2015 by PH patient Meredith Wilharber and her husband, Randy. In March 2015, Meredith was diagnosed with pulmonary arterial hypertension. After her diagnosis, the Wilharbers consulted with PH specialists across the country in an effort to find the best possible care for Meredith. During their consultations, Meredith and Randy were told time and time again how fortunate they were that Meredith was diagnosed with PAH quickly after symptom onset. While those comments did not have much meaning at the time given their focus on Meredith’s care, it became apparent in short order that so many PH patients do not share similar experiences. Meredith’s early diagnosis allowed the Wilharbers the benefit of options to battle PH with all available therapies. Unfortunately, the vast majority of PH patients are diagnosed years after symptom onset – often leading to unnecessary delays in care, potential reduction of life span, and severe limitation on physical ability.
BLF was created to change the diagnosis realities of PH patients. Our mission is to bring PH patients to an accurate and earlier diagnosis. PH is a direct attack one’s ability to breath – it’s a tough and lethal disease. We believe that every patient should have the opportunity to explore all available market therapies with the benefit of time to find a regimen that works for them. The average diagnosis is made 2.5 years after symptom onset. The average life expectancy of a PH patient is just over 3.2 years without appropriate care. This is unacceptable to us.
Since our founding, we have made important strides in bringing PH patients to a better. We have committed hundreds of thousands of dollars to fund research and studies to provide common practitioners tools that can identify whether a patient is a PH candidate, and place those individuals into the hands of specialists early – to rule in or rule out PH. Our partners at Stanford University, the Minnesota Heart Research Institute and the Mayo Clinic have identified what we believe to be breakthrough approaches to diagnosis of the disease state – all for the betterment of PH patient care.
We have dedicated a portion of our site specifically to researchers seeking to join our cause. Researchers may now apply for research grant funding aimed at PH diagnosis advancement through the website. We review research funding applications on an ongoing basis.
Due to the incredible support of BLF since 2015, we announced in November 2018 the launch of “Beyond Blue Lips,” a direct patient support campaign. Starting today, PH patients who face financial hardship as a result of their condition may know apply for grant support. Qualified patients may receive up to $1,000 in annual support from BLF for ongoing (non-medical) needs. Patients seeking support may apply directly to BLF by clicking on the Beyond Blue Lips tab of the site.
Take a look around the website. We hope you find it useful and informative – regardless of the reason for your visit or familiarity with PH. Look for BLF across the web, social media, and a town near you in 2019! We are hitting the road – and couldn’t be more excited about it. Thank you for your support!
Cheers,
The Blue Lips Team