Navigation Links
Children’s Mardi Gras Parade Marshal Kayleigh Johnson to Raise Awareness for Pulmonary Hypertension Association
Date:1/29/2016

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 25th anniversary 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 http://www.PHAssociation.org, @PHAssociation on Twitter or http://www.facebook.com/PulmonaryHypertensionAssociation.

Read the full story at http://www.prweb.com/releases/2016/01/prweb13191189.htm.


'/>"/>
Source: PRWeb
Copyright©2016 Vocus, Inc.
All rights reserved


Related medicine news :

1. Poor Dental Habits in Families Can Influence Children’s Dental Health Over a Lifetime, Says Medical Center Dental Care
2. VIDEO: Ryan Seacrest Invited to Groundbreaking of New Loma Linda University Children’s Hospital Tower through Social Media Campaign
3. Neil H. Greco Insurance Agency and the Children’s Institute Launch Joint Charity Drive to Benefit Autistic Children in the New Jersey Area
4. Dental365 Makes Donation to St. Jude Children’s Research Hospital
5. Coast Dental and SmileCare Deliver 450 Teddy Bears to Kids at Rady Children’s Hospital in San Diego
6. All Children’s Hospital Johns Hopkins Medicine Welcomes Director of New Institute Focused on Health of Mothers and Babies
7. Erlanger Agency Introduces a New Charity Campaign in Columbus, OH to Raise Funds for the Neurology Department at Nationwide Children’s Hospital
8. Dusty Wallace Insurance Partners with Children’s Advocacy Center for Denton County and Introduces Charity Campaign to Help Children Find Justice and Healing
9. SureVest Insurance Group Continues Community Enrichment Program by Fundraising for UNC Children’s Hospital in Support of Children Needing Medical Care
10. New Neurosurgeon at Joe DiMaggio Children’s Hospital Discusses Brain Tumors in Children
11. 7th Annual ANF Group Tour de Broward to Benefit Joe DiMaggio Children’s Hospital
Post Your Comments:
*Name:
*Comment:
*Email:
(Date:10/13/2017)... ... October 13, 2017 , ... “The Journey: From the ... danger possible to save lost souls in the Philippines. “The Journey: From the Mountains ... a dedicated teacher of the Bible. She has taught all ages and currently teaches ...
(Date:10/12/2017)... (PRWEB) , ... October 12, 2017 , ... ... are now treating sleep apnea using cutting-edge Oventus O2Vent technology. As ... serious sleep disorder characterized by frequent cessation in breathing. Oral appliances can offer ...
(Date:10/12/2017)... PALM CITY, Fla. (PRWEB) , ... October 12, 2017 , ... ... of cold therapy products, announced today the introduction of an innovative new design of ... the multipurpose pad so you get maximum comfort while controlling your pain while using ...
(Date:10/12/2017)... ... October 12, 2017 , ... Information about the technology: , ... to enable prevention of a major side effect of chemotherapy in children. Cisplatin ... patients. For cisplatin, hearing loss is FDA listed on-label as a dose limiting ...
(Date:10/12/2017)... Washington, D.C. (PRWEB) , ... October 12, 2017 , ... ... of their peers in Washington, D.C., for the 49th Congress of the International ... Ph.D ., Vice President of the Center for Cancer and Blood Disorders ...
Breaking Medicine News(10 mins):
(Date:9/19/2017)... , Sept. 19, 2017 HistoSonics, Inc., a venture-backed medical device company developing ... of targeted tissues, announced three leadership team developments today:   ... ... ... Veteran medical device executive Josh Stopek ...
(Date:9/18/2017)... Pa. and KALAMAZOO, Mich. , Sept. 18, ... , and OptiMed Specialty Pharmacy of ... to offer a strategic hub service that expedites and ... sought-after personal spirometer, Spiro PD 2.0, and wellness management ... spirometer is a medical device used to measure lung ...
(Date:9/13/2017)... Sept. 13, 2017   OrthoAtlanta has been named ... Football Host Committee (AFHC) for the 2018 College Football Playoff ... 2018, at Mercedes-Benz Stadium in Atlanta, Georgia ... AFHC "I,m In" campaign, participating in many activities leading up ... ...
Breaking Medicine Technology: