Cure HHT Promotes HHT Awareness with Partnership with Singer Marsha Hansen

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To promote awareness of HHT, Cure HHT has partnered with professional writer and singer, Marsha Hansen to empower others and shine a light on this rare disease.

To promote awareness of HHT, Cure HHT has partnered with professional writer and singer, Marsha Hansen to empower others and to shed a light on this rare disease. Proceeds from Marsha’s special recording of “This Little Light of Mine” featuring her brother-in-law, Keith Richards, Blondie Chaplin, and other well-known musicians will go directly to Cure HHT when downloaded on iTunes. http://www.CureHHT.org.

Cure HHT is building awareness, unifying the HHT community, educating the public, and advocating for patients and families all around the world. Hereditary Hemorrhagic Telangiectasia (HHT) is a cruel and unrelenting disease, affecting families for generations. While it can have seemingly mild symptoms like frequent nosebleeds, it can result in disabling and catastrophic events. This hereditary disorder creates abnormalities in blood vessels. They are fragile and thus susceptible to rupture and bleeding, which can result in lung and brain hemorrhage, stroke, and death. HHT, like ALS, is a rare disease, affecting 1 in 5,000 people, but it receives far less research grants and is often misdiagnosed. For more information please visit http://www.CureHHT.org.

Cure HHT has recently shared special tributes, featured stories of hope, and remembered those who have made a difference in the lives of people with HHT. Among other activities to raise awareness, individuals from across the world came together on Friday, June 23rd to honor their loved ones by lighting a candle to “LigHHT Up the World for HHT.”

Singer Marsha Hansen had never heard of HHT until a few years ago after a series of mini-strokes landed her in the hospital. Marsha credits her medical team and their relentless search for a cause of her strokes with her diagnosis of the disease. She then volunteered to help Cure HHT, hoping to raise awareness and heighten the visibility of this often-misdiagnosed disease.

Marsha is currently the Director of Advancement Communications at The University of Texas at El Paso and the author of My Soul is a Witness: The Message of the Spirituals in Word and Song and Finding God in the Shadows, co-written with the late Peter Huchthausen. Marsha is a former navel officer and the wife of a retired navy chaplain. She has collaborated on two music projects with her brother-in-law and “number one cheerleader” Keith Richards.

Marsha collaborated with Keith Richards and other members of The Dream Band including: South African artist Blondie Chaplin, renowned Bob Dylan drummer George Recelli, and the late Babi Floyd on the album My Soul Is A Witness. One of the songs, “This Little Light of Mine” stood out to Marsha after her HHT diagnosis and she felt “since this year’s theme for Cure HHT is ‘LigHHT Up the World’ it was a perfect time to share this song.” The song can be downloaded here: https://tinyurl.com/yb9pa2nf. In partnership with iTunes, proceeds from every download of the song will go to Cure HHT as they work to not only find a cure for the disease, but also educate the public and the HHT community worldwide. Visit CureHHT.org for more information.

Editor’s Note

  • More information on Marsha Hansen or Cure HHT available on request

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Marisa Maccia
Cure HHT
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Meaghan Flaherty
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