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Around the country this week, kids will dress up for the 100 Days of School celebration.  Rona had big plans for that celebration in 2023. For her first Halloween, we had dressed Rona up as a crazy cat lady (her father and I were each cats), so we knew how to make the wig and had the glasses to sell the look on hand. The weekend before spirit week kicked off, Rona developed a high fever and was admitted to the hospital for the first of six times before our admission for trans

I had dinner with a friend the other night. One of her family members was admitted to the hospital with concerning symptoms a few weeks ago, and an ER workup revealed advanced cancer. As she described what her family has been navigating — the constant coordination of appointments, treatments, and second opinions — I was transported back to that same period three years ago, when we were living this reality with Rona. I know many of you can relate. Getting to a diagnosis, and t

Read our 2025 Annual Report and watch the highlight reel below:

Rona's FUN LAB was selected as the 2025 Innovation Network Gathering Next Step Honoree. This recognition, which was determined by a vote across all attendees, recognizes the gains we have made in turning the concept our Co-Founder and Chief Momatologist Lindsey presented at last year's gathering into action. To keep the momentum going, we hosted a coffee meet up at the gathering to talk about what comes next and how attendees can support our efforts to better balance the magi

Thanks to your generosity, Rona's Rockin' Memorial Toy Drive 2025 was a huge success! We were able to double the value of the donation...

Today, children's hospitals around the country will celebrate Christmas in July.   During Rona's treatment, Santa brought Rona matching...

September 15, 2023 Last night, Rona Solfryd Edwards left this world the way she came into it: slow at first, and then in a flash. She was...

August 9, 2023 My updates have been spaced a bit more because we are still in a holding pattern. We did get some good news on the viral...

July 15, 2023 I've gotten feedback that my updates are generally quite positive and optimistic. Sometimes I don't share the hard stuff...

September 1, 2023 Yesterday we rang in Rona's sixth birthday. Earlier this summer, we were told this would be a day we may not see so it...

August 18, 2023 Medically speaking, this wasn't our greatest week. We still don't have cell counts, the viral counts ticked up again, and...

June 9, 2023 Rona officially engrafted on Saturday (Day 16), which means my cells have begun to make cells in her marrow! This week her...

August 1, 2023 I know I missed the update last week and a few of you have reached out to see what is going on in our world. The truth is,...

July 20, 2023 We wanted to let you know that the combination of prayers, reiki, healing vibes, holy water, novenas, mantras, etc., that...

June 16, 2023 This week has been a rough one. One of the key risks for transplant of kids with Aplastic Anemia is the reemergence of...

July 8, 2023 Another week, another rollercoaster. We still don't have any cell counts, which is to be expected, so we are in a bit of a...

July 6, 2023 Earlier this year, every time someone asked me how I was doing, Sir Elton John popped into my head singing, "I'm still...

June 23, 2023 Over the weekend, we enrolled in a second clinical trial which involves taking T Cells from a third party donor, activating...

June 3, 2023 The big news from this week is that Rona is starting to make cells, which is great news. It looks like she is engrafting in...