By Frances Saldana
The much anticipated 2022 Orange County Marathon on the weekend of May 1st turned out to be more than we could have hoped for!
COVID kept us hunkered down for a couple of years, but thanks to the vaccine, we are getting out again, and at HD-CARE we felt safe enough to participate in the OC Marathon.We laced up our running shoes and promoted HD awareness, especially because May is HD AWARENESS MONTH. We had 24 runners in team HD-CARE, as well as volunteers from the HD-CARE Board and family members.
The event took on an added celebratory event as Eric Arnold from the UCI Thompson lab took 1st place in the 5K run!!!
It was a great day, developing new friendships, encouraging hope, and creating a fun-filled experience along with our scientists, patient advocates, and family members. There was a true team spirit as we continue this journey in search of a treatment or cure for Huntington’s disease. We are so grateful for everyone’s continued support. We won’t stop until we get to the finish line, and that means a treatment for Huntington’s disease.
Learn About Patient Advocate Champion Frances Saldana
Frances became an advocate for Huntington’s Disease (HD) in 1994, as all three of her children inherited HD from their late father. Frances implemented the Huntington’s Disease Society of America (HDSA) Affiliate in Orange County, California, and advocated successfully for the HD Clinic at UC Irvine in 2005. She co-founded HD-CARE in 2012 and now serves as President Emeritus. She is an Ambassador with Americans for Cures, the organization that authored Proposition 71 which passed and became known as The California Institute for Regenerative Medicine (CIRM).
Frances has been recognized for her advocacy work by the Genetic Policy Institute at The World Stem Cell Summit, as well as by UC Irvine, with a Living Our Values Award, by the Volvo Corporation with a Volvo for Life Hometown Heroes Award, and other organizations for her unwavering commitment to promote excellence in care for the HD community.
Frances lost her daughter, Marie, to Huntington’s disease in 2009, her daughter, Margie in 2014, and her son, Michael, in 2017. She has two grandchildren who are now “at risk” to inherit Huntington’s disease. Her mission in life has now become to educate the public about HD, to support HD research, and to advocate for the HD community. She lives to see Huntington’s Disease eradicated in her lifetime. Frances lives in Temecula with her husband, David Saldana.
ALS AWARENESS MONTH INFORMATION
You can read about ALS Awareness activities from our friends at ALS Association Golden West Chapter here:
Here are some facts about ALS: