SISTERS FIGHTING FOR A CURE
Donation protected
SISTERS FIGHTING FOR A CURE!
Sydny, age 21 along with her younger sister Sevryn age 6 suffer from a rare genetic disorder called Wolfram Syndrome (WS). Wolfram Syndrome is a rare and devastating form of diabetes. Unlike common types of diabetes, these sisters will go on to develop vision loss, hearing loss and neurodegeneration. These symptoms progress through the first decades of life, and most patients lose their battle with this disease by age 30.
Sydny enjoys photography, listening to music, writing & drawing. Sevryn enjoys reading and dancing, and like her older sister, she loves to draw and listen to music. Imagine losing your hearing, your vision, or both. Imagine losing your balance or coordination, having muscle spasms and or seizures. Knowing that your body is slowly shutting down. Sydny’s and Sevryn’s reality of living with this disease daily has become their motivation to raise awareness and funding.
They want to share their story in hopes that they can help raise the necessary funding for The Snow Foundation, a nonprofit organization dedicated to finding a cure for Wolfram Syndrome. The Snow Foundation along with Dr. Fumihiko Urano would like to conduct a clinical trial on a drug that could possibly stop the progression of this horrible disease. Financial support continues to be the rate-limiting factor in their ability to conduct these trials and get the necessary drug therapy to these patients. To watch these girls struggle with the manifestations of this disease is heartbreaking, but to know that they could possible lose their lives because of insufficient funds, is not acceptable.
As their mother, I am making a plea to all of you to help me raise the necessary funding in order to help me save my daughters. Please consider donating to The Snow Foundation. Your donation is tax deductible, but more importantly you are giving Sydny and Sevryn a chance to live a normal life, a life that they both deserve. No donation is too small.
Please carry them in your thoughts & prayers. Join our fight to raise awareness for Wolfram Syndrome. Share our story. Help us find a cure.
HELP SYDNY & SEVRYN FIGHT FOR A CURE!
For more information on Wolfram Syndrome & The Snow Foundation, Please visit
www.thesnowfoundation.org
Sydny, age 21 along with her younger sister Sevryn age 6 suffer from a rare genetic disorder called Wolfram Syndrome (WS). Wolfram Syndrome is a rare and devastating form of diabetes. Unlike common types of diabetes, these sisters will go on to develop vision loss, hearing loss and neurodegeneration. These symptoms progress through the first decades of life, and most patients lose their battle with this disease by age 30.
Sydny enjoys photography, listening to music, writing & drawing. Sevryn enjoys reading and dancing, and like her older sister, she loves to draw and listen to music. Imagine losing your hearing, your vision, or both. Imagine losing your balance or coordination, having muscle spasms and or seizures. Knowing that your body is slowly shutting down. Sydny’s and Sevryn’s reality of living with this disease daily has become their motivation to raise awareness and funding.
They want to share their story in hopes that they can help raise the necessary funding for The Snow Foundation, a nonprofit organization dedicated to finding a cure for Wolfram Syndrome. The Snow Foundation along with Dr. Fumihiko Urano would like to conduct a clinical trial on a drug that could possibly stop the progression of this horrible disease. Financial support continues to be the rate-limiting factor in their ability to conduct these trials and get the necessary drug therapy to these patients. To watch these girls struggle with the manifestations of this disease is heartbreaking, but to know that they could possible lose their lives because of insufficient funds, is not acceptable.
As their mother, I am making a plea to all of you to help me raise the necessary funding in order to help me save my daughters. Please consider donating to The Snow Foundation. Your donation is tax deductible, but more importantly you are giving Sydny and Sevryn a chance to live a normal life, a life that they both deserve. No donation is too small.
Please carry them in your thoughts & prayers. Join our fight to raise awareness for Wolfram Syndrome. Share our story. Help us find a cure.
HELP SYDNY & SEVRYN FIGHT FOR A CURE!
For more information on Wolfram Syndrome & The Snow Foundation, Please visit
www.thesnowfoundation.org
Organizer and beneficiary
Elena Garcia Johnson
Organizer
Brighton, CO
Stephanie Snow Gebel
Beneficiary
