Io graduated from UC Santa Cruz in 2007.  He waited for a year for his girlfriend, my daughter, Kimmie, to graduate so that they could move to Portland together.  My family always used really nice adjectives when talking about Io.  Even my then 90 year-old mother enjoyed him and the kind way he treated her only granddaughter.  However, not long after arriving in Portland, Io was diagnosed with Rhabdomyosarcoma (RMS), a rare type of cancer that forms in soft tissue.

It’s been just about 10 years since Io lost his harsh battle with RMS with Kimmie holding his hand. That time was heartbreaking. In the battle against RMS the medical toolkit available to doctors was, and still is, extremely underwhelming against such a devastating opponent.

Kimmie’s older brother, Phil, is a high-functioning autistic, what used to be called Asperger’s. Phil had horrible eczema, also known as atopic dermatitis.  His lesions were so bad that children waiting with him in doctor’s offices were sometimes afraid of him, causing him to look and feel like a monster.  We tried everything but nothing helped.  His next stage therapy was consideration of radiation treatment as his dermatologist waited for the release of Dupixent, a new and promising drug.  Phil was given a prescription quickly after its approval.  And to our astonishment, IT WORKED!  It’s not a cure per say, but Phil’s life has vastly improved.  He has a life now that he couldn’t have before.  He has a girlfriend, and might even be able to work once we get COVID under control.  For now, Phil needs to stay isolated because Dupixent suppresses the immune system putting him at higher risk of infection.  To many, Dupixent has proven a great addition to the medical toolkit in the fight against severe eczema.

Bringing this story full- circle for the our family is the connection between cc-TDI’s RMS research and Dupixent. cc-TDI has recently published three papers on Dupixent research and it’s potential to stop new metastases in rhabdomyosarcoma. While this drug won’t likely stop the growth of already-established metastases, it could potentially be used as a maintenance drug for high risk newly diagnosed or relapse RMS patients.

Not all medical tools in the toolkits are cures.  Many just buy time and function.  Dupixent has proven its use to Phil and we sure could use some, ANY, new additions to the medical toolkit against RMS.  Our family remains committed to backing clinical research for future Io’s. Is it possible that Dupixent could be added to the RMS toolkit?  Please join us as we continue to back this critical research. 

– Larry, Kimmie and Phil’s Dad.

Share this post
Share on facebook
Share on google
Share on twitter
Share on linkedin