viernes, 16 de enero de 2015

Suzzane Pontow anda en bici en San Francisco y muestra en cada pasola playera de la Fundación enero 2015

Suzanne Pontow te mencionó en un comentario.
Suzanne escribió:  "OK, thank you and you guys are embarrassing me. Let me tell you about my shirt, and you will understand the love I have for Veronica Ruiz Moreno, and why I take a lot of selfies with her shirt. 
I met Verónica Ruiz Moreno at a Huntington’s Disease Symposium in Santa Maria, California in July, 2014.Huntington’s Disease, or HD, is a devastating neuro-degenerative disease thatusually shows up in middle age and causes death in brain cells that regulate emotions and movement.
  Over a course of many years the HD patient becomes increasingly difficult to care for as a result of uncontrollable anger,depression, pain and a loss of control over the body, so it is excessively hard on the family caregivers. Then their loved one dies of the disease. If a parent has it, there child has a 50-50 chance of also having the HD gene and disease. There is no cure or even treatment for HD or the childhood version called Juvenile HD (JHD). My boss and mentor, Dr. Jan Nolta, has a research program in HD/JHD and a clinical trial of a potential cell therapy underway at UC Davis Institute for RegenerativeCures.
At the HDConference I had given a talk on cord blood, and later was walking through the hotel when a small, beautiful brunette in high heels and a little black dress stopped me and hugged me, loudly declaring ‘I love you!” in a fantastic Mexican accent. Her outgoing and vivacious nature was infectious…although I didn’t know who she was, I felt her love, looked in her eyes and knew it was genuine. Ihugged her back, hard.
We had a few opportunities to talk that day and the next and became fast friends. She has a wonderful husband and 3 year old son and lives in Mexico City. Veronica is one of many passionate advocates for HD research, and she has started a foundation in Mexico, where she lives. It is her dream to be able to help families in Mexico undergo preimplantation genetic diagnosis (PGD) with IVF, the only way to ensure the HD gene is not passed on to one’s children. Veronica runs marathons representing her foundation, and the shirt I have is from a marathon she ran in Caracas. She is an incredible runner, and is sponsored by Brooks (running shoes). More recently she came in 2nd in a marathon in Chile. She uses her running to bring attention to HD, and to bring a message of hope. This disease is often on her mind, because Veronica has the HD gene.
Veronica is very brave, having undergone genetic testing for the HD gene. Veronica chooses to defy the fate dictated by her genes.‘Diagnosis is not Destiny’ is her motto and the motto of her foundation (inSpanish). So she keeps running and spreading the word about HD. As of now, she is healthy and her brain shows no sign of the disease.
I have never met a stronger or more beautiful woman, and am so proud to wear her shirt. I like to take it with me biking, and send Veronica pictures of my trips with her shirt. And every chance I get, I say ‘Ask me about my shirt’. And then I tell this story about an amazing woman…"

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