Skin to Stem: One family's odyssey to the space city to support CLIFAHDD research
Researchers on Channeling Hope's scientific advisory board need to collect a skin biopsy from a current patient to develop stem cells to use in testing possible treatments in the lab. The ideal patient is Wyatt, a 12-year-old boy in Ohio with a common variation of a mutation in the NALCN gene. For months, his mother has searched for a doctor who is able to take a skin biopsy. She spoke to 8 different doctors! While she found doctors willing to collect the skin biopsy, she could not enlist any healthcare system able to ship the sample to the research team at Baylor College of Medicine in Houston on standby to create the stem cells. The time-consuming regulatory paperwork for research (i.e., material transfer agreement, IRB approval) required to send samples proved too high of a barrier for the health systems and doctors.
After months of delays and rejections, including by one of the world's best hospitals, Wyatt's family has committed to travel to all the way Houston to make this happen. With the special care equipment he requires, flying is not possible.
To make the trip, Wyatt's parents, grandparents, and siblings are renting an RV to drive him from Ohio to Texas. We would love to support them and bring awareness to the challenges rare disease families face to advance research, and to highlight Baylor College of Medicine Pediatric Neurology and and Developmental Neuroscience for their support for NALCN research. You can help by supporting a fundraiser specific to this cause.
Channeling Hope would also like to thank Road Adventures by Mark Wahlberg for generously discounting the RV rental!
SPREAD THE WORD:
To bring attention to the amazing gift Wyatt's family is giving to the research community, Channeling Hope is putting out a press release about their travels. Please share with any media outlets you think may be interested in this story.