Sandy Rock, 1949-2020 - pictured outdoors in 2019
Sandy Rock, 1949-2020

Sandy Rock left this earth as she lived it, with gratitude and with a legacy of comforting others and giving hope for a brighter day. Like many people who live with complex health conditions, Sandy faced each day with a decision—to feel defeated or to act with persistence and confidence. Anyone who knew Sandy would share with you, the latter was the only option for her.

Adira Foundation’s board chair, Jim Rock, was Sandy’s husband of over 50 years. When he shared with our Adira family the news of Sandy’s passing, we knew as an organization that seeks the stories of real people with complex health problems to guide our work, Sandy’s was one we needed to share when the time was right.

A model of strength

Like most who were acquainted with Sandy and her story, we viewed Sandy as a model of strength, courage, and inspiration. Sandy fought the good fight for decades, without complaint or anger. Her journey was a testament to navigating healthcare and organizing efforts to help the many who were not as able as Sandy. She stood for the patient, the caregiver, the advocate—we strive for the same at Adira.

In her 40s, Sandy was diagnosed with a rare blood disorder, immune thrombocytopenic purpura (ITP), that paved the course for her conditions and health hurdles for years to follow. As a mother of two daughters, Rachelle and Julia, and as Jim’s constant companion in marriage and in life, Sandy was committed to staying active and engaged. She was one who everyone could count on.

Sandy had early disappointments that shaped her life outlook. Prior to their second daughter, Julia, Sandy had lost a child in the womb, and under the supervision of her physician was forced to stay bedridden for eight long and tortuous weeks. Jim told me he was in awe of his wife, who under those conditions managed her attitude and through the profound sadness of losing a child, moved forward with a spirit and a plan to live life to its fullest and to be there for her family and others.

After surgeries and various treatments, Sandy learned that she had also developed pulmonary fibrosis as a side effect of one of the ITP medications. She was told she likely had only three years to live—and it changed the course of her life.

On the road for advocacy

Jim and Sandy Rock

Not much was known about pulmonary fibrosis, according to Jim—so of course, Sandy made the decision to find out all that she could about the medical condition that now was a part of her life. With Jim by her side, Sandy took to the road. Jim and Sandy traveled across the country to learn from experts, attend conferences, meet with congressional and regional leaders in California. She met with Governor Arnold Schwarzenegger to advocate for more support for people with pulmonary fibrosis and other rare conditions.

To the amazement from many in the medical community, Sandy lived 20 years beyond diagnosis. Once again, anyone who knew Sandy would tell you, she was prime to beat the odds, and she did.

To the good fortune for all the people who knew Sandy, in those 20 years, she is credited for doing a great deal for many with pulmonary fibrosis and other rare diseases. Jim and Sandy’s commitment made an impact that will continue for a long time ahead. This includes:

  • Sandy’s efforts forming a support group for pulmonary fibrosis in Sacramento. It first consisted of five individuals, and now more than 62 people meet and support each other.
  • Coalitions were formed to support people with otherwise isolating rare diagnoses.
  • Movement in treatment has advanced thanks to more awareness.

All of this clearly reflects the advocacy set by Sandy Rock. Jim and Sandy together were involved with the organization that preceded Adira, and Jim continued his commitment to people with rare and chronic health issues as the founding chair of Adira’s board. Sandy was incredibly supportive of this as she was with everything that Jim was involved in.

We all miss Sandy. She was a beautiful person, who as Jim said, “felt better when she was able to help others.” Her daughter Rachelle and son-in-law Ernie and her grandchildren, Olivia and Iris, and of course, Jim and Sandy’s youngest daughter, Julia, are her greatest achievements.

We say goodbye and Godspeed to Sandy Rock, a woman who utterly understood the purpose of a life well lived. In this season of gratitude, we all have much to be grateful for in knowing, respecting, and cherishing the memory of Sandy Rock and all that she gave to her family, friends and the many who counted on her warmth and wisdom.

Marilyn Spinner is Adira’s chief development and external affairs officer.