The Atypical HUS Foundation

The ARTS and Advocacy

 VIDEO PROJECT

Rare Disease Day 2012 – Soaring Voices

     “The SOARING VOICES project asks you to create a video clip or slideshow that informs, enlightens, and uplifts ….showing the beauty in life and laughter. While patients with rare diseases don’t live charmed lives, we can create ‘charmed moments’ to gather and be heard around the world – providing moments of grace and humor, while demonstrating the power of love and strength in our commitment to find solutions.”

Soaring Voices, Project Overview

     It’s difficult enough when you or a loved one becomes ill, but when the diagnosis involved a rare disease the challenges are even tougher.  Medical information may be hard to find, and often not much research has been done given the small number of patients affected by a rare disease.  Finding support to combat the feeling of isolation is key, as is keeping a positive attitude.

SOARING VOICES Project:  Written explanation, information and links

Video:  Tricky Britches plays their song "A Rare One"

at Local Sprouts in Portland, Maine in support of international Rare Disease Day and issuing an invitation to all rare disease patients and their families to lift their ‘Soaring Voices’. 

Soaring Voices – Patient and Family Videos

     See some moving Rare Disease Day videos made for the Soaring Voices project and created by aHUS patients, caregivers, and their circle of family and friends.

A  Rare One – by Tricky Britches

Music and Lyrics

     Tricky Britches  guitarist Jed Bresette, inspired by one family’s struggles,  created the song "A Rare One" to highlight the life challenges that face rare disease patients.  A Rare One serves as an honest declaration of strength in the face of adversity, and  the

It's a mighty heavy load - Sometimes it's hard to stay afloat, but
You can always count on me to help you through the stormy seas, and
When you feel like breaking down and giving up, just look around and
You will find many people who are just like me - They're just like you

“….and I just want you to know, you are not alone.”

 

Lyrics for A Rare One are available 3 language, by clicking below for

Lyrics for A Rare One in  English,

Lyrics for A Rare One in  French,

and Lyrics for A Rare One in Spanish

 

A Rare One by Tricky Britches- (created especially for Soaring Voices) download the  vocal version or an instrumental version of  A Rare One at CD Baby

Tricky Britches generously is donating 20% of profits from their CD Baby music downloads of "A Rare One" to 5 non-profits that serve rare disease patients.     

 

 

 

 

 

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