Young Pulmonary Hypertension Patient Will Lead the Parade as National Nonprofit Charity Celebrates 25th Anniversary
Lake Charles, La., – Jan. 29, 2016 – The 2016 Southwest Louisiana Mardi Gras Children’s Day parade is giving 10-year-old Kayleigh Johnson a chance to bring more awareness to a life-threatening, too-often misdiagnosed disease. Johnson – diagnosed two years ago with pulmonary hypertension (PH) – is the parade’s grand marshal.
“We are proud of Kayleigh for being named grand marshal and for her strength, determination and willingness to share her story in order to save lives by letting more people know about PH,” said Pulmonary Hypertension Association (PHA) President and CEO Rino Aldrighetti. “PHA is celebrating our 25thanniversary this year recognizing the many advances in the care of PH patients since our founding, while understanding there is much more do. For example, while there are now 14 FDA-approved treatments to treat the disease, there are no approved long-term treatments for children with PH.”
PH is increased pressure in the blood vessels of the lungs that can lead to death from right heart failure. With symptoms that include shortness of breath, fatigue and chest pain, many people suffering from PH lose valuable time as they are treated for other illnesses, such as asthma. Kayleigh has pulmonary arterial hypertension (PAH), a form of PH. PAH is a progressive, incurable disease that some people call “the other high blood pressure.” Because some PAH patients go months, sometimes years, as Kayleigh did, believing they have something else, the average length of survival without treatment can be only 2.8 years after diagnosis.
“Since my diagnosis, I’ve met kids from across Louisiana, Texas and other states who also suffer from PH,” Johnson said. “I’m asking them to be on the float with me. I hope this makes more people aware of the disease so those who have it can know sooner rather than later, and others can do what they can to help us fight PH.”
The Mardi Gras Children’s Day parade begins at 2 p.m. on Sunday, Feb. 7, in Lake Charles, a two-hour drive from New Orleans.
“I was so happy for Kayleigh when the festival organizers named her grand marshal,” said Jessica Johnson, the fourth-grader’s mother. “It was amazing to see her treated like the princess her father, Dwain, our entire family and I know she is. She is a warrior who is always smiling, even when she has a bad day.”
Kayleigh, who wants people to understand she is like healthy children her age, spends time with her friends, dancing, reading and raising awareness about PH. She is also a rider athlete with Ainsley’s Angels, an organization that helps people with disabilities participate in endurance races.
For 12 consecutive years, PHA has received the highest rating – four stars – for fiscal accountability and transparency from Charity Navigator, placing it in the top half of 1 percent of all rated charities. In November, to broaden public awareness about the disease, PHA launched Heart2CurePH (#Heart2CurePH), a national multi-media public service campaign with the tagline, “At PHA, we’re putting our heart into finding a cure.” The campaign includes radio and TV public service announcements, print ads, billboards, digital ads and public transit advertising.
The association expects nearly 2,000 attendees to help celebrate its 25th anniversary at PHA’s International PH Conference and Scientific Sessions June 17-19 in Dallas this summer.
About the Pulmonary Hypertension Association
Headquartered in Silver Spring, Md., with a growing list of chapters across the country, the Pulmonary Hypertension Association (PHA) is the country’s leading pulmonary hypertension organization. Its mission is to extend and improve the lives of those affected by PH; its vision is a world without PH, empowered by hope. PHA achieves this by connecting and working together with the entire PH community of patients, families and medical professionals. Among its programs, PHA facilitates more than 245 support groups around the country and delivers continuing education for medical professionals through PHA Online University. For 12 consecutive years, PHA has received the highest rating — four stars — for fiscal accountability and transparency from Charity Navigator, placing it in the top half of 1 percent of all rated charities. For more information, please go to www.PHAssociation.org, @PHAssociation on Twitter or www.facebook.com/PulmonaryHypertensionAssociation.
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