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Published in Sierra Sun on September 2, 2022
July 2, 1966 – August 28, 2022
Sandy was born on July 2nd, 1966 in Neenah, WI, moved to California at six months old and lived there for the rest of her life. She grew up in Concord, CA, and went to college in Sacramento, earning her MBA.
She worked for Hewlett-Packard in Roseville, CA, for 28 years with her last job as a Global Business Analyst.
Sandy married her best friend, Joe Morris, and they were together for 33 years. They have three incredible children Kylan (25), Colton (23) and Justin (21) who were absolutely their mom’s pride and joy. Sandy would say that her greatest accomplishments were her three beautiful children. Everything else pales in comparison.
She is also survived by her father, Ed Seffern (Auburn, CA), her mother, Marlene Seffern (Walnut Creek, CA), her brother, Brent Seffern, and sister-in-law, Tracy, and her adored nieces, Abby and Emma. She would never have survived five years of ALS without her powerful, dedicated wolf pack of lifetime friends.
After her ALS diagnosis, Sandy realized that her disease had been largely ignored for the past 150 years and jumped into ALS Advocacy with her goal of ‘leaving this disease in a better place than she found it.’
She teamed up with fierce activists and worked to get the FDA to finalize an ALS guidance document for better clinical trial design and Expanded Access Programs as they were basically nonexistent at the time.
Although no one wants this devastating disease, Sandy fell in love with the amazing ALS community, and dedicated most of her waking hours to working with them, particularly with the I Am ALS organization.
Sandy was lucky enough to partner with Brian Wallach in the summer of 2018 when they created and she led all four I Am ALS community teams for years until she was breathing with BiPap support but stayed active with the teams until her death. Honored to be one of the original I AM ALS leaders, Sandy fiercely believed in the ‘power of the patient’ and was constantly amazed at the significant results accomplished.
Sandy and her family lobbied hard to get two laws successfully passed into legislation – ALS Disability Insurance Access Act of 2019 and Act for ALS in 2021.
She was on dozens of Patient Advisory Councils outside of IAA and worked with over 40 ALS drug sponsors to improve trials and offer wider access to investigational therapies. She was thrilled to contribute to the novel MGH Platform Trial with her heroes, Dr Cudkowiz and Dr Paganoni.
Her proudest moments from her ‘diagnosed life’s work’ was when she and the Clinical Trials team implemented the Patient-Centric Trial Design (PaCTD) ratings and improved ALS trial design and when President Biden publicly thanked her as he signed Act for ALS into law.
She was also incredibly proud of the Morris ALS Principles team.
If you have been lucky enough to cross paths with Sandy, you know she welcomed you in with gracious ease, a warm smile, a bright laugh and most likely with a deliciously mixed drink.
Sandy was a force, whether it was going to battle with the FDA or planning her treasured children’s birthday parties, she always had a big vision, the energy to see it through to completion, and a detailed spreadsheet to go with it. Of her many gifts, Sandy reminded us to celebrate our connections by acknowledging victories and milestones with you, the big ones and the little ones; it didn’t matter, Sandy was on your side and cheering for you.
Sandy showed her love easily and abundantly; her love is inspiring. Sandy lived with integrity, respect and positivity. She made those around her better. She saw and heard people; when she asked you ‘what’s your favorite song?’ she listened and added it to her Favorites playlist. Her friendship was a true gift.
Sandy loved the outdoors; active in crossfit, cross country skiing, running, horses, and hiking. Her dogs and her were reciprocally devoted to each other. Clever and witty, Sandy loved to keep laughing. Sandy faced ALS with bravery, inner strength and grace. As her disease progressed, she took delight in sipping whiskey, watching the sunset over the Sierra Valley with her devoted family by her side and singing along to her favorite song (or maybe yours.)
Sandy Morris passed away bravely and peacefully, surrounded by her family as the sun set on August 28, 2022.
Sandy does not want any flowers sent (please, no!), she would greatly prefer that those who loved her would spread awareness about ALS wherever they can. If you absolutely feel compelled to donate, please donate to Compassionate Care ALS who do an excellent job of supporting and caring for people living with ALS (ccals.org). They took such good care of Sandy and so many of her friends in the ALS community. There will be no service as there was a 2021 celebration of life party with so many of her beloveds.