The first recipient of the HD-CARE Champion Award, Griselda Barbosa, passed away last night after a two year battle with cancer. Free at last, she'll be reunited with her beloved grandson, Sebastian, who passed away from juvenile HD five years ago.
Our beloved friend and HD Warrior will always be remembered for her passion and grit in advocating for a treatment for Huntington's disease. Her passion and velour to end HD transcended over her own fight with cancer. She was kind and compassionate beyond belief. With pain clearly visible from her cancer, she made several two-hour trips to visit my own son, Michael, at his care home. I will forever be grateful for her kindness and the love she demonstrated while visiting with him. Her beautiful spirit was a bright light in good times and in challenging times. Being with Griselda meant loving each other and celebrating life!
In late September, 2016, surrounded by her family while receiving the HD-CARE Champion award, she asked that we never forget her family, her son Christian who suffers from HD, and all those affected by HD. Griselda, the HD community and HD-CARE will never forget your family and all those affected by HD. I will miss you, my beautiful friend, and we will never forget you.
The first recipient of our HD-CARE Champion, Griselda Barbosa, ended her fight with cancer last night, February 11, 2017.
"A contributor to this study is HD-CARE Scientific Advisory Board Member, Dr. Joan Steffan. The study showed that phosphorylating a specific spot of the protein called S421 protected a mouse model of Huntington's from developing symptoms of Huntington's disease".
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On March 26, the FDA published “The Voice of the Patient” (FDA’s) based on responses from over 200 HD patient advocates who attended the Patient-Focused Drug Development Initiative. Board member Daniel Medina and I attended that meeting in Washington D.C. This was a historical moment for HD families...Read More
"Huntington’s Disease has been hidden for too long. A global coalition of Huntington’s Disease patient advocates has come together under the HDdennomore initiative (pronounced “Hidden No More”) to change that. Together, we are raising awareness of HD and mobilizing action to improve the lives of people affected by HD around the world.
WHEN: May 18, 2017
WHERE: Vatican City, Italy
On May 18, in the first ever papal audience with HD families, Pope Francis will meet people affected by HD from South America to shine a light on the disease and bring global attention to the plight of the HD community. A warm welcome is extended to the entire HD community to attend."
Visit the HDdennomore site to sign up and receive information on how to attend the event (coming soon). You'll also receive email updates on the latest news.
Happy New Year! We thank everyone who made 2016 such a successful year for our HD community, and welcome new volunteers to join our UCI support organization! 2017 is going to be another busy year for HD-CARE...Read More