Remembering Scott

On Wednesday I went to Johns Hopkins Hospital to have brain surgery to remove my tumor. I've tried a few new looks during my hospital stay (see photos). My first stop was to get a brain wand MRI and place white markers on my head for neuronavigation in preparation for surgery. After that I had a few hours before surgery check-in.    Trying a new look with fiducial markers for neuronavigation   Cool 3D model of my brain, with tumor shown in red Returning to the hospital was emotionally difficult for both my sister and me, because the last time we were there was Scott's final days in the hospital. So I relived some memories as I walked down the hallways, and I took the indoor route that I remembered to go visit Big Jesus, located under the Johns Hopkins dome.  Return to Big Jesus  I had stepped before Big Jesus first as a visitor when my sister was going there for medical school, then as a caregiver, and now as a patient. I looked up at him and prayed ...

While my life has been turned upside down this last month, the need to advocate for medical research and better access to health care does not stop (and if anything, now has greater urgency). Rare Disease Week, organized by the  EveryLife Foundation for Rare Diseases , will take place on Feb 25-26 in Washington, D.C. Last year, over 1,000 rare disease advocates from all 50 states showed up to share our stories and make legislative asks from our elected representatives. Rare disease in the aggregate is not rare - 10% of Americans have a rare disease, about half of whom are children. The issues that patients and families fighting rare disease face are not niche. We all benefit from accelerating the development of new therapies, newborn screening so that children can receive treatment earlier, and fewer hurdles to health care. Registration for Rare Disease Week opens on Jan 7 ( https://everylifefoundation.org/rare.../rare-disease-week/ ). The Pheo Para Alliance will be sending a t...